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Email Lists & AIDS Treatment

By John S. James

aidstreatmail.jpg - 15.98 K 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,

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 it 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.

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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 .

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 thousand 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:

(1) Email addresses can be either upper or lower case (it does not matter which you use).

(2) In the line 'subscribe ' 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.


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: 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: First line: subscribe LIPIDLIST

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: First line: subscribe TREATMENT

Traffic: about 3 messages per day.


An excellent source of news reports on AIDS, including treatment news. This is a read-only list.

To subscribe, send email to: Subject: subscribe

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.

Note: You can also subscribe through the Web, at:

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 (, 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: (note single 'n' in 'preventionews').

Traffic: one message per day, on weekdays.

AIDS ( Mailing List (same information as the 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 . 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: First line: subscribe AIDS

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: First line: subscribe AIDSACT

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.

The major Health and Development Forum lists are:

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:

Community Research

International discussion on community-based research; 1092 members, 139 messages,


International AIDS issues (for example, research ethics, AIDS orphans, tuberculosis, organizations, travel restrictions, conferences, ...); 1317 members, 287 messages,


Set up for journalists; 650 members, only 7 messages so far,


Southeast Asia issues; 2303 members, 2332 messages,


Africa issues; 1748 members, 556 messages,


News and issues specific to women or men; 1381 members, 593 messages,


Discusses treatment issues and emotional support, with a developing-world focus; 602 members, 282 messages,


Immigrant rights and health; 420 members, 58 messages,


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,


News, health information; 660 members, 148 messages,

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 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 . Articles are brief and very readable, and tend to focus on specific treatments or drugs. To subscribe send email to: 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: First line: subscribe fastfax


Discussion "to explore issues related to homosexuality and the medical profession." To subscribe, send email to: First line: subscribe glb-medical-l


Both medical information and emotional support for persons with hemophilia. To subscribe, send email to: First line: subscribe hemophilia-support


For medical information and emotional support for persons with HIV. To subscribe, send email to: 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:

QueerNet lists

Six different lists on "AIDS and HIV issues and support"; not all of them are currently active. For more information, see:

Spanish language lists:


To subscribe, send email to: First line: subscribe gentepoz


To subscribe, send email to: First line: subscribe sida-ets end


To subscribe, send email to: First line: subscribe veihache

For More Information; Acknowledgment

More information on these and other lists is available at:

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:

  • 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 ' (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.

    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.

    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

    Editor and Publisher: John S. James
    Associate Editor: Tadd T. Tobias
    Reader Services: Tom Fontaine and Denny Smith
    Operations Manager: Danalan Richard Copeland

    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: $270/year. Includes early delivery of an extra copy by email. Nonprofit organizations: $135/year. Includes early delivery of an extra copy by email. Individuals: $120/year, or $70 for six months. Special discount for persons with financial difficulties: $54/year, or $30 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.

    ISSN # 1052-4207

    Copyright 1999 by John S. James.

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