AIDS Trestment News
December 3, 1999
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Treatment and Related AIDS Email Lists
by John S. James
Email lists allow "virtual communities" of hundreds or even thousands of people who share a common interest to communicate as a group, regardless of geography or time zones. You can join lists to communicate about experiences with particular medical treatments, for example -- or to receive specialized news reports. Often you can ask questions, and someone on the list may send you the information you need. There are tens of thousands of email lists currently running and open to the public, so whatever you are interested in is probably represented; if not, it is fairly easy to start a new list.
One reason this form of communication is not more widely used is that it can be hard to know where to begin, as there is often no article or Web site which tells what lists are available in a particular field. Here we have collected information about some of the major lists on AIDS treatment and related topics. This compilation is not at all complete; in fact it would be impossible to create a complete list of lists, because there is often a fuzzy line between private and public ones -- and because different people have different judgment on which are relevant enough to be included. (If you think important AIDS treatment lists are missing from this article, please let us know, as we plan to update it in next few months; you can reach us by email, email@example.com.)
Introduction to Email Lists; Different Kinds
An email list, also known as a "listserve," an "email conference," or an "elist," allows a group to communicate by email. If you subscribe to a list, then you will get any email addressed to that group; you can unsubscribe when you want to stop receiving that email. While you are subscribed, you can send an email which goes to all current subscribers of the list.
Some people are reluctant to join email lists because they fear that their email address will be sent to thousands of strangers. Fortunately, if you only join to receive messages, and do not send any, most lists (but not all) will keep your email address confidential. But if you send a message to the list, your address will usually be transmitted to all the members, unless you take steps to prevent that. If you do plan to send messages, the easiest way to prevent your email address from being widely distributed is to get a second email address for this purpose, perhaps through a free service such as http://www.hotmail.com.
- Discussion vs. read-only lists: Most lists are "discussion" lists, meaning that any subscriber can send a message to the group. Some lists are "read only," meaning that subscribers can only receive messages, such as news bulletins, sent by the list administrator(s).
- Unmoderated vs. moderated: Most lists are "unmoderated," meaning that if a subscriber sends a message to the group, it will be delivered immediately to all the subscribers, without anyone reading it first to approve it. "Moderated" lists do not transmit the messages until they are approved by one or more moderators.
Even unmoderated lists are usually protected against "spam," or unsolicited commercial email, because only subscribers can send messages; the larger problems for email lists are "flame wars" (unproductive arguments back and forth between a few subscribers), and off-topic messages that are unlikely to interest the list subscribers. If not controlled, unwanted messages can kill a list by driving people away. Most unmoderated lists allow the administrator(s) to block particular email addresses, in the rare cases where a subscriber persists in sending inappropriate email.
- Digest vs. regular formats (optional): Some lists transmit many messages every day; to avoid cluttering your mailbox, many allow subscribers to specify a "digest" form, meaning that all the different messages are combined into one longer one, and sent once a day or at some other interval. The messages are not shortened or edited; you receive the same information, whether or not you ask for the digest format.
Often it is better to avoid the digest, even for lists with heavy traffic, and instead receive separate messages, but have them delivered to a special mailbox by using an email filters (see below). You can more easily print an individual message, or reply to it, when it is not part of a digest. Also, you may wish to have your email program display the messages by "thread" (have all those on the same topic appear together), which is not possible if the messages are combined into digests.
- Email filters (optional): Most email software allows you to set up "filters" which automatically sort incoming email into different mailboxes. Some lists, as a courtesy to their members, automatically include the name of the list, in brackets, within the title of every message -- making it easy to create a filter which can distinguish this list's mail from any other email.
- List archives (optional): Some email lists have archives where you can read previous messages. The better archives are kept on Web sites, which show a list of the titles; readers can click any title to see the full message. Much less convenient are email-only archives, where special requests can be used to retrieve old messages. Most lists do not have archives at all.
Etiquette in Writing Messages
New subscribers are urged to wait at first and read incoming email, to learn something about the content and tone of the discussion, before sending their own messages. There may be hundreds or even thousands of subscribers; before sending a message to all of them, think about what will be welcome and useful, instead of being an annoyance.
In practice, the large majority of list subscribers never write messages, but join to get information sent by others. Usually a handful of people do most of the writing. But any issue of interest to the subscribers is likely to be discussed, making email lists a truly democratic institution. Often new information reaches the public through email lists much sooner than it otherwise would.
List administrators usually have two main problems: to get subscribers to contribute valuable information, and to avoid personal attacks or disputes, off-topic messages, or other email which is not helpful or welcome to most subscribers.
Major AIDS Treatment Lists
Here are some of the most important lists for treatment or related AIDS information.
Notes on format:
- Email addresses can be either upper or lower case (it does not matter which you use).
- In the line "subscribe <your first name> <your last name>" in the instructions below, substitute your first and last name; do not include the angle brackets. Many lists do not ask for your name. For those that do, a name must be provided or the "subscribe" command will not work -- but it need not be your real name. In any case, the list must have an email address which can reach you, so usually you are not truly anonymous, unless you have set up an anonymous email address.
AIDS Treatment Lists:
This moderated list is for information about all aspects of protease-inhibitor treatment, including side effects, lifestyle changes, or drug interactions. This list is the successor to the "Crix List," which started in 1995 to share experiences with Crixivan, Merck's protease inhibitor.
For information, or to subscribe, go to: http://www.pozlink.com and follow instructions there.
Traffic: about 10 messages per day. You may want to ask for the digest format when subscribing -- or better, set up a filter to move the separate messages into a mailbox you create for this list.
"A forum for discussion, networking and action for all people affected by... metabolic disorders such as lipodystrophy, hyperlipidemia, body shape changes, and insulin resistance...," sponsored by ACT UP/Golden Gate in San Francisco.
To subscribe, send email to: firstname.lastname@example.org.
First line: "subscribe LIPIDLIST <your first name> <your last name>".
Traffic: about 5 messages per day; digest format available.
- TREATMENT (at Critical Path AIDS Project)
For sharing medical and scientific information to support treatment activism. "This TREATMENT list is intended to complement the AIDSACT list [see below]. AIDSACT is for the more political aspects of treatment activism; TREATMENT is for the more technical aspects."
To subscribe, send email to: email@example.com.
First line: "subscribe TREATMENT <your first name> <your last name>".
Traffic: about 3 messages per day.
- AEGIS "AIDS" List
An excellent source of news reports on AIDS, including treatment news. This is a read-only list.
To subscribe, send email to: firstname.lastname@example.org Subject: "subscribe". Note: You can also subscribe through the Web, at: http://www.aegis.com/todaysnews/list.asp.
Traffic: about 5 messages per day (some messages include several news stories). After subscribing, you can set your subscription to "Digest" by following the instructions provided.
- CDC HIV/STD/TB Prevention News Update (formerly CDC Daily Summaries)
Brief summaries of daily news, prepared under the direction of the U.S. Centers for Disease Control.
To avoid copyright restrictions, these stories are usually summaries of wire-service, newspaper, and other major media stories -- which in turn are often rewrites of press releases, which themselves are summaries of scientific papers, presentations, or other original documents. While these News Updates are carefully prepared, there can be errors, as with any media; before making critical decisions, check with the original documents, or other sources.
The CDC HIV/STD/TB Prevention News Update comes automatically through either the AEGIS "AIDS" list, or the AIDS Mailing List (sci.med.aids, see below), so no need to subscribe if you are already getting one of those. Some readers subscribe to the Prevention News Update alone for a quick summary of AIDS news in the mainstream press.
To subscribe, send email to: email@example.com (note single "n" in "preventionews").
Traffic: one message per day, on weekdays.
- AIDS (sci.med.aids) Mailing List (same information as the sci.med.aids newsgroup)
A moderated list with extensive information about AIDS science and medical research. Much more information about this list is available in its FAQ (frequently asked questions) document at http://www.aids.wustl.edu. This FAQ also includes information on how to post to the list so that all email software will faithfully reproduce your message. It also has answers to frequent questions about AIDS.
To subscribe, send email to: firstname.lastname@example.org.
First line: "subscribe AIDS <your email address>".
Traffic: about three messages per day; digest available.
"A list for AIDS activists to discuss advocacy and policy issues of relevance to the prevention, research and treatment of AIDS."
To subscribe, send email to: email@example.com.
First line: "subscribe AIDSACT <your first name> <your last name>".
Traffic: about 3 messages per day.
Health and Development Forums
These email lists (currently 11 of them), maintained in Geneva, Switzerland, focus on international AIDS issues. This system began as a few email lists set up to support the 12th World AIDS Conference in the summer of 1998.
Excellent archiving software makes the whole history of these lists available on the Web, to anybody. You do not need to subscribe in order to read the messages which have been posted.
Major Health and Development Forum Lists:
- Treatment Access
Discussion list on improving access to medical care around the world. As of November 28, this list had 1338 registered members (subscribers), and 642 messages. To read the messages already posted to this list, or to send your own message to it, go to: http://www.hivnet.ch:8000/topics/treatment-access/.
International discussion on community-based research; 1092 members, 139 messages, http://www.hivnet.ch:8000/topics/community-research/.
International AIDS issues (for example, research ethics, AIDS orphans, tuberculosis, organizations, travel restrictions, conferences, ...); 1317 members, 287 messages, http://www.hivnet.ch:8000/global/intaids/.
Set up for journalists; 650 members, only 7 messages so far, http://www.hivnet.ch:8000/global/media-aids/.
Southeast Asia issues; 2303 members, 2332 messages, http://www.hivnet.ch:8000/asia/sea-aids/.
Africa issues; 1748 members, 556 messages, http://www.hivnet.ch:8000/africa/af-aids/.
News and issues specific to women or men; 1381 members, 593 messages, http://www.hivnet.ch:8000/topics/gender-aids/.
Discusses treatment issues and emotional support, with a developing-world focus; 602 members, 282 messages, http://www.hivnet.ch:8000/topics/pwha-net/.
Immigrant rights and health; 420 members, 58 messages, http://www.hivnet.ch:8000/topics/migration/.
Politics of AIDS treatment and distribution of resources, with a developing-world focus; the tone and topics resemble the AIDSACT email list, which is more U.S.-focused. 890 members, 66 messages, http://www.hivnet.ch:8000/topics/human-rights/.
News, health information; 660 members, 148 messages, http://www.hivnet.ch:8000/topics/sex-work/.
In addition, Health and Development Forums has two country-specific lists, on Bangladesh and on Zambia.
Other Email Lists
"API-HIV info is a closed, unmoderated list aimed at facilitating the exchange of information and ideas around HIV Prevention Intervention and Research in the API communities. To subscribe to this list: Send an e-mail to firstname.lastname@example.org and indicate your interest in being included in the list. Provide brief information about yourself, your agency and/or community affiliation."
Canadian AIDS news, 2-5 messages per week; see http://www.catie.ca. Articles are brief and very readable, and tend to focus on specific treatments or drugs. To subscribe send email to: email@example.com. First line: "subscribe catie-news".
One email per week with news stories that focus on the Philadelphia area, plus U.S. national news as well. To subscribe, send email to: firstname.lastname@example.org. First line: "subscribe fastfax".
Discussion "to explore issues related to homosexuality and the medical profession." To subscribe, send email to: email@example.com. First line: "subscribe glb-medical-l <your first name> <your last name>".
Both medical information and emotional support for persons with hemophilia. To subscribe, send email to: firstname.lastname@example.org. First line: "subscribe hemophilia-support".
For medical information and emotional support for persons with HIV. To subscribe, send email to: email@example.com. First line: "subscribe hiv-support".
An electronic conference organized with the cooperation of physicians and researchers at Massachusetts General Hospital, Harvard Medical School, Harvard AIDS Institute, and Harvard School of Public Health. For information, and to subscribe, see: http://www.healthnet.org/programs/procaare.html.
- QueerNet lists
Six different lists on "AIDS and HIV issues and support"; not all of them are currently active. For more information, see: http://www.queernet.org/index-hiv.html.
Spanish Language Lists
For More Information; Acknowledgment
More information on these and other lists is available at: http://www.infoweb.org/elists/index.html.
Acknowledgment: John Labella, who maintains that site, contributed to this article.
Appendix: Notes on Subscribing and Unsubscribing
Almost all lists have at least two email addresses -- one for administrative matters (mainly subscribing or unsubscribing), and a separate address for sending a message to everyone. Do not make the mistake of sending an Unsubscribe message to everyone on the list! (Fortunately, today's list software will usually block such requests.)
When you subscribe, you may receive a message telling you how to confirm your subscription (usually by replying to the confirmation message in some way -- or in some cases, by not replying at all -- be sure to follow the instructions). This is to prevent persons who do not approve of the list from sabotaging it by forging thousands of subscription requests, signing up people who do not want to subscribe.
Some lists are publicly announced but only open to certain people, for example persons with HIV or other medical conditions. When you subscribe, the list administrator may ask for information to determine whether you qualify.
Whether or not there is a qualification or confirmation step, new subscribers will receive a message with information about the list -- including how to unsubscribe. Save this message, to avoid difficulty in unsubscribing later. (Modern lists often include the unsubscribe information with every message, to prevent this problem.)
Difficulty unsubscribing from a list is usually due to one of these causes:
If none of this works, contact the list administrator and ask to be unsubscribed. There is usually a special address for contacting a person who is managing the list.
- Losing the instructions sent when you subscribed.
If this happens to you, it is usually possible to guess; if you have the information on how to subscribe, just do the same, changing "subscribe" to "unsubscribe" of course, and also omitting your first and last name, if that was requested when you subscribed. (If you do not have the instructions for how to subscribe, they may be listed above in this article; otherwise, a good guess is to send email to the address for subscribe/unsubscribe requests (not the address to send to all list members), and in line 1 of the message, say "unsubscribe <name-of-list>" (substituting the name of the list, and without the angle brackets or single quotes).
- Trying to unsubscribe from a different email address.
If you are now using a different email address than the one you subscribed with, you will not be recognized as having subscribed. If you change your email address, it is a courtesy to the list administrator to unsubscribe before closing the old one.
- Trying to unsubscribe with different email software.
Sometimes a different email software package will send message headers in a changed format, and your email will not be recognized as coming from you (even though you are still receiving messages from the list); if you try to send a message to the list, it may disappear with no warning to you. If possible, use the previous software to unsubscribe, then subscribe again with the new software if you still want to be on the list.
Copyright Restrictions Block Non-English AIDS Information
by Chris Green
While AIDS "information overload" increases among English speakers, far less information on treatment, prevention, and other AIDS news is available in other languages. In much of Asia, and most probably elsewhere in the developing world, few doctors know English well enough to make best use of the treatment information available; and most prevention and support materials are rarely accessible to people who do not speak one of the major world languages. For many in developing countries, where 95% of AIDS cases occur, the first gap that must be bridged is the information gap.
Because we take it for granted, few of us recognize that in fact information is the cheapest and most basic form of treatment. Without information on new therapies, how can doctors correctly advise patients? Without information on new drugs, how can activists work to encourage their availability -- or advocate for health-care resources? What is the meaning of informed consent when the counselors themselves are ill informed?
Clearly there are many challenges concerned with information access. The basic infrastructure for dissemination is often lacking, although this is improving faster than many expected. Translation is a time-consuming task -- although also a very good way to understand the material. And machine translation is coming closer to reality. These challenges are within the control of the countries concerned.
The remaining challenge is that of intellectual property rights. Much of the information, especially the "news," is copyright. This means that while anyone can read the information on the Reuters web site, for example, it cannot be distributed without permission -- in any language. Although it is possible to ask permission, rights holders may find it is often easier to just say "no" rather than deal with a request for rights to publish. And even if no one would care, organizations may run the risk that grants or other funding could be withdrawn were they to publish without permission.
To many, it seems unconscionable that there should be any restrictions placed upon access to information on health matters. As Dr. Gro Harlem Brundtland, Secretary General of the WHO said on 18 June 1999 at the Healthy Planet Conference, "We have learnt that we cannot hope for change towards sustainable development without democracy, freedom of speech and access to information." Notwithstanding this -- and similar comments by Secretary General of the United Nations Kofi Annan -- according to the Humanities Libraries Project, 60% of United Nations agencies place over-tight, defensive copyright restrictions upon their publications, and 20 major UN agencies charge higher prices for use of their information than developing countries can afford (see reference below).
Many organizations do make a special effort to facilitate dissemination of their material. Many of these have adopted so-called "copyleft" statements. One typical example from the Population Council: "Information from this Web site may be copied, reproduced, or distributed without permission from the authors or publisher, provided that the recipient of the information does not copy, reproduce, distribute or adapt this text for commercial gain, and provided further that the Population Council is credited as the source on all copies, reproductions, and distributions."
While this approach is a major step forward -- and clearly deserves more activist support -- it is less likely to be acceptable to the commercial information providers. However, a case could be made for special consideration to be given to the dissemination of health-related news in other languages. Granted this raises a number of questions on definition of "health-related" and "news," but with dialog, these should not raise insuperable problems.
The World Intellectual Property Organization (WIPO) has indicated a readiness to work with the International Publishers Association, but it appears that this would be on a article by article basis. While a significant move, such an arrangement could be an administrative nightmare for shoe-string organizations. Instead, why not negotiate a blanket agreement between the main copyright holders and the developing-country organization, allowing translation and dissemination of all items from that source with appropriate acknowledgment?
One of the leading advocates of a more open approach to provision of such information is the Humanities Libraries Project, http://www.oneworld.org/globalprojects/humcdrom/copyrigh.htm. Their web site provides more information, additional examples of "copyleft" statements, and details of a worldwide movement and petition to release all UN publications and publicly funded humanitarian and development information.
Additional ideas may be obtained from "Copyleft, Open Source an Sharing Digital Information" at: http://dsl.org/copyleft/.
[Chris Green has been doing AIDS work in Jakarta, Indonesia since 1991. He currently publishes two regular newsletters on AIDS, as well as helping a number of volunteer organizations. He will be discussing copyright problems and solutions on the Treatment-Access electronic forum, http://www.hivnet.ch:8000/topics/treatment-access -- or can be reached directly at firstname.lastname@example.org.]
Hydroxychloroquine + ddI + Hydroxyurea Antiretroviral Trial, AIDS Research Alliance, Los Angeles
A small phase I/II trial of a new antiretroviral combination is now recruiting in Los Angeles. Hydroxychloroquine, a well-known malaria drug also used in treating rheumatoid arthritis and lupus, has shown modest anti-HIV activity both in laboratory studies, and in patients. It is much less active against HIV than the protease inhibitors, so it will not replace standard therapy; instead, the point of this trial is to find a regimen which is less expensive and more tolerable, for certain patients who need treatment but for one reason or another are not using standard drug combinations.
This study was organized and is sponsored by the AIDS Research Alliance (formerly Search Alliance); shortly before enrollment began, Bristol Myers provided a grant to fully fund the study. Sanofi donated the hydroxychloroquine.
Because of the number of study visits required for tests, volunteers will probably need to live in the Los Angeles area in order to participate. A total of 18 volunteers can enter this trial, in three different cohorts:
- Cohort A, little (less than 6 months) or no antiretroviral therapy, no previous use of ddI, CD4 count above 200, and viral load between 5,000 and 80,000;
- Cohort B, patients who have failed antiretroviral therapy, and stopped it because of toxicity or failure to maintain viral suppression -- with CD4 count over 100, viral load between 5,000 and 1,000,000, and no ddI use within the past year; and
- Cohort C, patients who have abandoned HAART for personal reasons during the past six months, and have been off therapy for at least three months and not used ddI within the last year -- with CD4 count greater than 200, viral load 5,000 to 250,000.
For more information, call Corigan Castro at 310-358-2429.
Note: This study opened in September; we were reluctant to announce it because we were hearing fragmentary reports of serious cases of toxicity with certain ddI combinations, and did not know how to warn our readers properly. But now the new information about the ddI risks has been widely distributed (see AIDS Treatment News #331). While no one knows for sure, it is widely suspected that many of the problems may result from mitochondrial toxicity due to too much exposure to nucleoside analog drugs. Hydroxychloroquine, the new drug in this combination, is not a nucleoside analog and does not seem to have the same toxicities. Its major long-term risk is to the eyes, and ophthalmologic examinations are included in this study so that the drug can be discontinued if necessary.
Antiretroviral Activity of Hydroxychloroquine
Here is a partial list of pre-clinical (1,2,3) and clinical (4,5,6) papers on antiretroviral activity of hydroxychloroquine.
- Boelaert JR and Sperber K, Antiretroviral treatment. The Lancet October 10, 1998; volume 352, pages 1224-1225.
- Sperber K, Kalb TH, Stecher VJ, Banerjee R, and Mayer L. Inhibition of human immunodeficiency virus type 1 replication by hydroxychloroquine in T cells and monocytes. AIDS Research and Human Retroviruses. 1993; volume 9, number 1, pages 91- 98.
- Boelaert JR, Sperber K, and Piette J. Chloroquine exerts an additive in vitro anti-HIV type 1 effect when associated with didanosine and hydroxyurea. AIDS Research and Human Retroviruses September 20, 1999; volume 15, pages 1241-1247.
- Sperber K, Louie M, Kraus T, and others. Hydroxychloroquine treatment in patients with human immunodeficiency virus type 1. Clinical Therapeutics 1995; volume 17, number 4, pages 622-636.
- Sperber K, Chiang G, Chen H, and others. Comparison of hydroxychloroquine with zidovudine in asymptomatic patients infected with human immunodeficiency virus type 1. Clinical Therapeutics 1997; volume 19, number 5, pages 913-923.
- Ornstein MH and Serber K. The antiinflammatory and antiviral effects of hydroxychloroquine in two patients with acquired immunodeficiency syndrome and active inflammatory arthritis. Arthritis & Rheumatism January 1996; volume 39, number 1, pages 157-161.
ISSN # 1052-4207
Copyright 1999 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.