&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&& J O H N J A M E S writes on A I D S &&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&& Copyright 1993 by John S. James; permission granted for non-commercial use. AIDS TREATMENT NEWS Issue # 172, April 2, 1993 phone 800/TREAT-1-2 CONTENTS: [items are separated by "*****" for this display] Electronic Mail for Political Mobilization, Community Building Alternative Medicine Advocates Divided over New NIH Research Program AIDS Pathogenesis: Recent Articles on Lymph-Node Infection Announcements March on Washington Lobby Days, April 22-23, 26-27 San Francisco: Health Funding Coalition Meets April 14 ***** Electronic Mail for Political Mobilization, Community Building by John S. James [Recent problems in Congress, where critical budgeting and other decisions are coming up, have shown that the AIDS community must do much better in getting people throughout the country to let their representatives know that AIDS matters to them. We believe that phone calls, personal visits, and letters are still the most important ways to contact Congress. But while researching the new technologies available for organizing these old-fashioned calls, letters, and visits, we learned that electronic mail could be so valuable to the AIDS community, for both political and non- political needs, that we wrote this article to let people know about its potential.] * * * "Electronic mail," also called e-mail, refers to sending text messages by computer, either to individual recipients or to distribution lists. The messages are not necessarily typed by the sender; they may also be messages which the sender received and forwarded to other interested parties, or other information already available by computer which the sender may select from or customize. Therefore, even persons with poor typing skills can use these systems. Electronic mail can be much more flexible and considerably less expensive than other communication systems such as fax, long-distance calls, or regular first-class mail. Until now, its use has been limited for two reasons. (1) Until recently, systems involving computer communication over phone lines have been difficult to learn how to use (and many still are). And (2), a chicken-and-egg problem retards the spread of any new communications technology into a community, as people have little incentive to use a communications medium if their friends and colleagues are not using it. Many different systems of electronic mail are available. Fortunately, it is not necessary for everybody in the AIDS community to choose the same one, because most of the major public systems can send messages to each other automatically. Advantages of Electronic Mail While the available systems have different strengths, it is now possible to combine all of the following advantages: * Ease of use. The better systems automatically handle the communication technology, and require no jargon or technical settings by the user. They are not much harder to learn how to use than a fax machine. * Speed. Electronic mail is instantaneous on most systems, although some others may take minutes or hours to reach users across the country or around the world. * Convenience. Sending a message requires little more than typing the name of the recipient (or distribution list), eliminating the need to obtain supplies, do photocopying, and stuff and post envelopes. * Distribution. A message can be sent to a distribution list of 10, 100, or more as easily as to an individual -- just by typing the name of the list instead of the name of the person. * Forwarding. Received messages can be forwarded to other individuals, organizations, or lists, just by typing their name(s). And there is no loss of print quality, as there is when a paper fax is re-faxed. * Automatic reply. Recipients can easily send replies to the sender, without even typing the name of the addressee. The sender can use this facility to plan easy-response voting and surveys. Electronic mail encourages senders who want a reply to send a "yesable proposition" -- something that the recipient can respond to, if they want, without extensive research or other expenditure of much time or resources. * Feedback. On some systems, senders can find out if recipients have read the messages they sent -- and exactly when. * No phone tag. With electronic mail, senders and recipients can work at times of their convenience. * Compatibility. Electronic mail is usually compatible with standard word processors and other computer text data. * Fax, U. S. Mail compatibility. Some electronic mail systems will allow you to send a fax directly from e-mail, even if you do not have a fax machine. Also, some systems let you send a first-class letter directly from e-mail. These services cost extra, but they provide a convenient way to distribute the same message to organizations or individuals who have e-mail, who have faxes but not e-mail, or who have neither and must rely on the Post Office. * Optional databases. Messages sent and received can be saved on the computer and later searched for any word(s) which appeared in the title or the text. All earlier references to an individual, organization, date, event, or other subject can be found immediately -- an important advantage for organizers. * Conferences, forums. Messages can be sent to public (or private) discussions, or posted on electronic bulletin boards. You do not need to know the recipients in advance, but can use these media to contact new people who are working on similar projects, or who share your interests or concerns. * International access. E-mail messages can be sent to or received from people who have access to computers anywhere in the world -- almost as easily as messages sent to a neighbor. Some systems charge more to send messages to Europe, Australia, etc. than to your neighbor next door, but on others, distance doesn't matter. * Breaking through isolation. Electronic mail allows people who may be isolated in small towns or rural areas, or shut in for health reasons, or who choose to remain anonymous, to connect with others who share their interests. It is now possible for people who are physically isolated to do important activist or other work by computer. * Outreach to constituencies, coalitions. Many existing communities are currently active on electronic mail -- including, for example, environmental, peace, and international activists. Clearly we should have more dialog with these and other groups, and electronic mail provides a medium to do so. Persons using electronic mail tend to be influential, as they have good communication with people and groups around the world. * Cost. On some systems, a single-page message may cost only a few cents, no matter how far it travels. And the computers required are the same ones already in wide use for word processing, etc., in homes and offices. In case your organization does need to purchase a computer, some inexpensive, older, second-hand machines will work almost as well for electronic mail as the newest models. If you need a modem (the device which connects the computer to a telephone line), a new one can cost as little as $100. Be sure to get one with a data transmission speed of 2400 bps (or higher). Some modems will also let you send and receive faxes directly from your computer, without a fax machine. There is no need for an extra phone line, as electronic mail can usually be transmitted in a few minutes a day -- automatically in the middle of the night if necessary, in case your phone must be kept free during the day. If you already have access to a computer and modem, the entire startup cost for trying electronic mail -- software, documentation, and a few hours to explore the system -- can be $25 or less; free kits are often included in computer products. Prices for using these systems vary widely, but evening and weekend rates are often much lower than business- hour rates. It should cost you no more than a few dollars an hour for off-peak use (including communication charges; see next paragraph). You normally connect to electronic mail by a telephone call from your computer to the nearest "node," or connection point, to one of several nation-wide data communication networks; this is usually less expensive than paying for a long-distance call to the city where the computer which runs the electronic-mail system is located. Often the cost of the data network is included in the hourly charge you pay for using electronic mail; sometimes it is billed separately. Alaska, Hawaii, or outside the United States, the cost can be substantially more than from the other states. Obstacles to Electronic Mail in the AIDS Community In the past, technical difficulty and cost were the main obstacles to wider use of electronic mail. Today these problems are no longer serious; they are fairly easily overcome. The only remaining obstacle is that, so far, the AIDS community has made relatively little use of electronic mail. So when an AIDS activist, or service provider, or person with AIDS first gets onto an electronic-mail system, their question may be, "What now?" Most of their friends and colleagues will not have e-mail accounts. And much of the AIDS information on some systems consists of casual chatting, ax-to-grind messages or articles, or other material not likely to be helpful. People working with AIDS are busy, and will drop e-mail quickly if it is not useful to them. How, then, can the AIDS community build the critical mass so that as new people try e-mail, they find enough people and information there to make their continued participation worthwhile? The same problem once existed with fax, which is now almost universal in AIDS work. Who would buy a fax machine when they couldn't use it because none of their colleagues had one? This problem was solved by the leadership of the larger AIDS organizations, who acquired fax machines first, creating incentives for smaller organizations to get them also. Today almost everyone working on AIDS uses fax if they can possibly afford it. The electronic mail bottleneck might be solved in the same way, by the leadership of major AIDS organizations (see "Political Mobilization," below). There is also an approach which large organizations, small organizations, or individuals can start now on their own -- using electronic mail to provide service and leadership on AIDS to communities already on electronic mail, especially those they have affinity or connection with. For example, although there has been relatively little AIDS activity on most e-mail systems, there are large and active gay groups which use them. Persons interested in AIDS who take the time to develop some expertise could be of service in many ways, for example: * Distributing political action alerts from AIDS organizations; * Summarizing news stories about AIDS; * Compiling resource lists of information sources, service organizations, etc., which they or their friends have personally found useful; * Bringing together individuals and groups with interests in common; * Contributing their own expertise or special knowledge. For example, a biochemist could start a discussion to help people understand news reports about experimental treatments. Or someone working for a university, pharmaceutical company, government agency, etc. could contribute tips they have picked up, anonymously if necessary, that could be useful to others. The possibilities are endless. But the key to providing leadership is the same in each case -- to be helpful to the people already online, through use of your personal resources such as professional background, contacts, specialized knowledge, experience, and/or hard work. You can become a leader this way no matter where you live, even if you cannot physically travel to any AIDS organizations or meetings. As we researched this article, we found repeated hints that e-mail use for AIDS work is ready to take off. People we have worked with turned out to have new e-mail accounts, although we had not previously known of them having any interest in this area. Political Mobilization How could electronic mail help mobilize citizens to contact their representatives about AIDS issues? We believe that for the next several years at least, most messages to Congress and to local officials will not be by electronic mail, but by telephone, etc. This is because most people do not have computers. Also, many people are more likely to respond to voice than to written information; people return most of the calls on their answering machines, but reply to far fewer of the written solicitations they receive. (Electronic mail to the Clinton White House, however, is already becoming important.) We believe that the major political use of electronic mail in the near future can be illustrated by the following scenario. An AIDS lobbyist in Washington learns that it is important that members of a certain House or Senate committee receive calls from their voters back home quickly, perhaps in the next two or three days, before a crucial vote. The lobbyist composes an action alert and sends it by e-mail, perhaps directly from the Capitol building, to all members of a board (which may represent several organizations) which will decide whether to call the alert on this issue. Because of the urgency, the board members are also alerted by phone; otherwise, they might not know to check their e-mail that day. After a meeting or phone conversations among the board, the alert is modified and approved. A staff member then sends the alert by e-mail to several hundred key local contacts -- organizations or individuals in or near the home districts of the members of the committee. Sending these hundreds of messages -- using a distribution list previously prepared for that particular committee and entered into the e-mail system -- takes about ten minutes of the staff person's time, so it does not have to wait behind other urgent business, as sending several hundred faxes would. These local contacts can be allied organizations, or paid part-time employees of the lobbying organization, or key volunteers. Each picks up the phone and makes several, several dozen, or several hundred local calls to residents of the congressional district who have previously signed up to receive these action alerts, and agreed to act on most of them. The same day, thousands of calls from constituents start to come in to members of the Congressional committee. All these callers have received a professionally prepared briefing -- but they do not all say the same thing, as the action alert suggests that they speak from their personal experiences. The end result is not only a large number of messages to Congress on the immediate issue, but also a contribution to the long-term education of Congress on the importance of AIDS to their voters -- as well as the development of local organization throughout the country, building additional strength for the future. The only significant e-mail expense is the cost of sending the alert to the several hundred local contacts; this can cost as little as a few cents each. For a major activation, the total e-mail expense might be less than $100 for a House committee, somewhat more for a Senate committee (since districts cover the entire state), and more for a general mobilization for a vote on the House or Senate floor. The main expense of the whole activation is not e-mail or computers, but paying the local contacts when they are not volunteers. Some of these local contacts, especially the volunteers, might also get a phone call from the staff of the lobbying organization, telling them that urgent e-mail has arrived. Since there might be only a few action alerts each month, the volunteers might not be in the habit of checking their e-mail every day. What happens if local contacts are out of town and do not get their e-mail or phone messages until it is too late to call their lists? One way to guard against this is to have these contacts (or one person on each of their local lists) call back to the lobbying organization which called the alert, to say that they have received it. As these calls come in, staff members check off the local contacts who are known to be making their calls -- and then telephone previously-arranged substitutes when necessary. It is also important to check whether the end recipients of the alerts are actually calling their representatives. An easy way to find out is to have the local contacts ask them occasionally, during the calls they are making anyway, and keep track of the answers on survey forms. With this information, the organization calling the action alerts can monitor and maintain the system, knowing where to tune or extend it when necessary. It would be helpful if a coalition of several major organizations would call these alerts, to make them authoritative and assure the public that they were well thought out and represented a strong AIDS consensus. Also, the financing should be handled separately from the decision-making process, so that immediate financial crises in certain organizations do not force them to pull out of some alerts and interfere with consensus development. And we believe it is also important that these alerts go to people who want them and, in return for getting them, have agreed that they will usually respond; this way costs are kept down, and there will be a good response rate. All of this could be set up today. The only reason it hasn't happened already using electronic mail is that AIDS activists and organizers are so busy that most have not had time to explore this new area. Also, organizations are afraid of taking on a continuing financial commitment to a new technology; they are held back by the fear (needless, we think) that expenses could be large and difficult to control. We hope this article will help by providing a picture of what could be done, what costs are involved, and how to begin. Privacy Considerations An article in the current (April 6) Advocate, "Online With the FBI," looks at some of the legal and privacy concerns for e- mail users. The major legal battle now concerns sexually explicit material, especially graphics, transmitted by computer. This does not immediately affect political organizing. Aside from legal questions, some people with AIDS or HIV need to maintain their privacy for various reasons -- for example, the concern that insurance companies or others might buy AIDS or gay lists, prepared for marketing purposes, to use as blacklists. Electronic-mail systems usually allow and often encourage the use of "handles" -- you do not need to tell other users your real name. But usually this communication is not truly anonymous, because most of the commercial systems require a credit card or other payment method which would allow the owner of the account to be traced by the system's operators. You can get AIDS information by computer while remaining truly anonymous. Some of the best sources of computerized AIDS information are free, and as a public service allow anyone to use them without giving their name or making any prior arrangements (see phone numbers below). But while you can receive much AIDS information this way, your ability to send messages anonymously is limited. Those concerned about privacy should realize that if they call an "800" or "900" phone number, their number will be given to the organization receiving the call. Also, the new "caller ID" service now available in some areas will transmit the calling number, unless blocked by the caller. Another caution: on some systems, if you are one of the recipients of a message sent to a distribution list, it can be easy to confuse the command to reply only to the sender, with the command to reply to all recipients of the sender's message as well. People have made this mistake and transmitted private messages to large unintended audiences. Anyone using e-mail must assume that all their communications are saved forever, as the companies providing the service need to create frequent backup copies of their computer data for archival storage, so that peoples' messages will not be lost in case of equipment failure. These backups can be searched quickly and completely -- by law-enforcement agencies or by the system administrators themselves -- to find topics of interest or to obtain an audit trail of one's communication. (Technically it would be possible for an electronic-mail system to provide a "sunset" capability, guaranteeing destruction of all copies of messages after a certain length of time, but we have not heard of such a service being offered.) Some privacy must be provided, or people will not trust computer communication for important uses, and the potential of the medium will be lost. But usually this privacy is protected only by law and by custom, not by technology controlled by the user. With electronic mail, the law, custom, and technology are still in early stages and rapidly developing. At present, therefore privacy depends in part on the different philosophies of the organizations and individuals who run the various systems. E-Mail Systems: Where to Begin Electronic mail systems publicly available include (in alphabetical order): America Online, AppleLink, CompuServe, Delphi, FidoNET, GEnie, MCI Mail, Peacenet, and The Well. Each has its own strengths and weaknesses. If you are part of a group which is already using one of these or a similar system, that one may be your best choice. Make sure that any system you select can send e-mail to and receive e-mail from the Internet, an international network of thousands of computers, often at universities. Most of the large systems which offer e-mail, including those named above, do connect to the Internet; but some others do not. Through the Internet, you can communicate with many thousands of users around the world. (You do not subscribe to the Internet directly, but use its facilities through other computer services.) America Online For setting up a communication network among AIDS activists, service organizations, etc., the e-mail system we consider most suitable is America Online. It is much easier to learn and use than most of the other systems. This is especially important for AIDS organizers, who cannot take time off from their work to deal with computer technicalities they would rather not need to know. America Online works best with one of three kinds of computer systems: Apple Macintosh, DOS, or Windows; however, certain other computers could be used. Fortunately, most personal computers already in homes and offices will work. The cost is modest -- both for miscellaneous use, and for sending large numbers of e-mail messages. The rate is currently $6 per hour at all times, with no extra charge for messages sent, or for other special services. (Access from Alaska and Hawaii costs more, due to communication charges.) One important feature is that the America Online software can have your computer phone the system unattended, in the middle of the night or at other times you specify, and send and receive all your pending electronic mail. It leaves a note on your computer screen telling whether any mail has been received. This is important because it helps to overcome a vicious circle which is the most serious obstacle to new individual users of electronic mail. Usually they get few or no messages at first, since others on the system do not know them. Therefore they do not check their mail, so others cannot rely on this method of communicating with them, and do not send them mail. But the real obstacle here is the discouragement of checking one's mail time and again in the beginning, and finding nothing. People will open and read their mail if they know it has come in. Besides electronic mail, America Online offers other services which AIDS activists and organizers can use, such as checking prices and availability of airline tickets and hotels, and even reserving both directly from one's computer, bypassing travel agents. There is also news online, including full text which can be searched for words of interest, and an encyclopedia. In addition, users can obtain extensive information about publicly-traded companies -- of particular interest to treatment activists needing background on pharmaceutical companies -- since America Online allows users to buy stocks by computer, through arrangement with a discount broker, and therefore provides information for investors. And the system allows you to send electronic mail to the White House: address it to "Clinton Pz" (without the quotes). All of these services cost no extra money, only the regular rate of $6 an hour. The corporate goal of America Online -- bringing groups of people together -- is favorable for much of the organizing and coalition building we want to do. And the system's management is well regarded by its users for respecting their privacy -- which is not the case with all companies. The best way to sign up is to get America Online, Membership Kit and Tour Guide, available in some bookstores for about $30; since a disk is included, be sure to get the one for the kind of computer you will be using, Macintosh, DOS, or Windows. You can also obtain the same kit at a discount by mail, from Digital Queers, 548 Castro St., Suite 150, San Francisco, CA 94114, for $20 (plus tax if required) plus $3 postage and handling; remember to specify what kind of computer you will be using. (Digital Queers is a new national nonprofit organization "of computer technology professionals dedicated to serving the lesbian and gay community through service, visibility, and activism.") PeaceNet (Institute for Global Communications) Another system we recommend is PeaceNet, run by the nonprofit Institute for Global Communications (IGC) in San Francisco; IGC also runs EcoNet and ConflictNet. For AIDS activists, the main advantage of PeaceNet may be the opportunities it offers to contact activists in other fields around the world. Major interest areas include Africa, Asia, Central America and other geographic regions, community, conflict resolution, development, economics, education, energy, environment, food and agriculture, forests, Greens movement, health, homeopathy, human rights, indigenous peoples, and many other topics. It includes a number of categories of political action alerts. It offers useful e-mail facilities through local calls in most cities in the U. S., and in many other cities throughout the world. The software, however, is not as convenient as America Online for those without computer experience. To find out more about PeaceNet, or to open an account, call the Institute for Global Communications, 415/442-0220. AIDS Information by Computer Besides the major commercial and non-profit electronic-mail services like those mentioned above, there are also thousands of "computer bulletin board systems" (BBS) -- small, independent operations often run by individuals. A few of these are AIDS- specific; many more are primarily gay but may have AIDS information sections. These can be useful for information sharing and for political mobilizing; however, their e-mail facilities are limited, and these systems are not as easy to use as modern e-mail systems like America Online. We have not covered these computer bulletin boards here, because they deserve a separate article. But we will mention two of them, and two other sources with extensive AIDS information, for readers who are interested. The computer equipment required to use the systems below is the same as for electronic mail. HIV/AIDS Info BBS, and AEGIS The AEGIS (AIDS Education General Information System) network links AIDS-related bulletin boards in Australia, Canada, England, France, Germany, Italy, the Netherlands, and 26 states in the U. S. The co-founder of the AEGIS network is the "HIV/AIDS Info BBS," run by the Sisters of St. Elizabeth of Hungary, located in San Juan Capistrano, California. This system is free, it has a large collection of AIDS information available, and you can submit new information which, if accepted, will be transmitted internationally to the other AEGIS systems at no cost to you. To connect to the HIV/AIDS Info BBS, have your computer call 714/248-2836. Communication settings should be 8 data bits, no parity, one stop bit. The system itself will provide further instructions. AIDS Info BBS Another system, the AIDS Info BBS, is separate from the one above, despite the similar names. The AIDS Info BBS has been run in San Francisco by Ben Gardiner since July 1985. It also has an extensive AIDS library available to callers, and it also allows free, anonymous use. (The system asks first-time users who they are, but these questions are optional.) To connect to the AIDS Info BBS, have your computer call 415/626-1246. To begin, type one or two carriage returns. Then follow the instructions provided. CAIN The Computerized AIDS Information Network (CAIN) is funded by the state of California, primarily as a service to California AIDS agencies. CAIN is not a BBS, but is provided through the Delphi system (one of the electronic-mail services mentioned above), so it is not free or anonymous; an account with Delphi is required. For more information, call CAIN at 213/993-7415. AIDSLINE This is not a BBS but a major research database, provided by the U. S. National Library of Medicine, of references and abstracts to AIDS-related articles published in scientific and medical journals. It contains selected records from MEDLINE, as well as other information such as abstracts published in AIDS conference proceedings. It is available either directly through the NLM, or through a number of different commercial database services. Other Communications Technologies for Political Mobilization E-mail is only one of the new technologies which can allow rapid, targeted mobilization of people willing phone their Congressional representatives and others about issues important to them. Two others that activists should also consider: * Fax broadcast. This allows you to send one fax to a distribution list which may include hundreds of recipients. One service, offered by MCI Telecommunications Corporation, offers pricing as low as about 25 cents per fax for a short fax at off- peak hours. You maintain your own distribution lists using their software on your IBM PC or compatible computer; any addition or change to your lists costs 25 cents a name, but this expense should be modest, as fax numbers are usually stable. One advantage of this approach to political mobilizing is that only the central organization needs to use a computer -- not the fax recipients. * Voice broadcast. This technology, now starting to be used in political campaigns, makes automatic calls to ordinary phones or answering machines to deliver action alerts (hopefully to people who have asked or agreed to receive them). Organizations can make many thousands of calls in a day to mobilize their supporters quickly. A major advantage of such systems is that recipients only need to have and use a telephone, not a fax machine or computer. Voice broadcast is different from ordinary voicemail in that it can reach people not on any voicemail system. Voicemail allows a voice message to be sent to a distribution list, but usually only to people on the same system. Keeping in Touch * A project co-sponsored by ACT UP/New York is planning the development of a national mobilizing network on AIDS issues, using the new and old communication technologies available. It is likely to focus on voice and/or fax systems more than e-mail. For more information, call Eric Sawyer at 212/864-5672, or George Hunt at 816/241-8439. This group will hold a meeting in Washington D. C., probably on April 24, the day before the lesbian/gay March on Washington. Call Eric Sawyer or George Hunt for the time and place. * AIDS TREATMENT NEWS can be reached by e-mail to "aidsnews" (without the quotes) on America Online. If you are on a different system, ask how to send e-mail to America Online; you may need to use our Internet address, "aidsnews@aol.com". We can also be reached at "aidsnews" on Peacenet, but we check our mail more often on America Online. * AIDS TREATMENT NEWS will publish e-mail addresses of AIDS and related organizations which want to be listed, to develop a directory of e-mail contacts accessible to the public. If you know of an address which should be included, please let us know, through our e-mail address above or otherwise. ***** Alternative Medicine Advocates Divided over New NIH Research Program by Dave Gilden The U. S. National Institutes of Health (NIH) Office of Alternative Medicine (OAM) may be new, but it is hard to miss these days. Its recently appointed director, Joe Jacobs, M. D., has been interviewed in Time magazine, USA Today, and twice in The New York Times, which gave a glowing description of his personality and accomplishments on March 16. The OAM also has been caught up in the surge of attention surrounding Bill Moyers PBS miniseries called Healing and the Mind. [Note: The OAM plans to award small grants for alternative- medicine research this year, and to conduct grant-writing workshops during the third week of April. For more information, phone the numbers given below.] Despite the publicity, questions persist regarding the depth of commitment by NIH to this effort to examine unorthodox or holistic therapeutic approaches. The impetus for the alternative medicine program came not from NIH, but from Iowa Congressman Berkley Bedell, who had recovered from cancer through unconventional therapy, and Senator Tom Harkin, also of Iowa. The Institutes have never been friendly to the medical dissidents the OAM is to sponsor. As one observer noted, "The NIH is full of very smart people. If they thought any of this was worthwhile, they would have done it long ago." The Office of Alternative Medicine is a small effort to widen the NIH's scope. Its budget is only $2 million dollars, compared to more than $10 billion for the NIH as a whole. And the money available for its research grants is smaller yet. Some $500,000 to $600,000 total will be available this year for ten or 20 grants. The OAM's professional staff numbers only four. Dr. Jacobs comes from a Native American background, but his experience is in Western medicine. According to The New York Times, he received training in pediatrics from Yale and Dartmouth and has an MBA from the University of Pennsylvania. His last job was as medical director of Aetna Life Insurance, an institution not known for its friendliness to alternative therapies. Dr. Jacobs was unavailable when AIDS TREATMENT NEWS tried to arrange an interview. However, we did speak at length with OAM assistant director, Daniel Eskinazi, D. D. S., Ph.D., L. Ac. Dr. Eskinazi, who has worked at the NIH for the past ten years, is one of a thin network of people there who are interested in alternative medicine. His doctorate is in immunochemistry, and he has studied homeopathy and acupuncture. This makes him the only person in the Office of Alternative Medicine to be a specialist in some of the areas the Office is supposed to study. According to Dr. Eskinazi, "Dr. Jacobs is very open-minded. Everything I have suggested, he has agreed to. This office is going to be a bridge between the established and alternative medicine communities. We can't compromise the science, but if we are convincing enough, we will make alternative medicine widely available." But Kaiya Montaocean, of the Center for Natural and Traditional Medicine in Washington, D. C., fears that "The Office of Alternative Medicine is afraid to get into AIDS. They have to look successful, and there is no easy answer in AIDS." Dr. Eskinazi insisted, "I can guarantee you that we aren't excluding anything." He contended that the OAM cannot predict where easy proofs of effectiveness will lie. There is also a widespread perception that the OAM will concentrate on fields the NIH establishment will find non- threatening, for example relaxation techniques, chiropractic, and acupuncture, for purposes such as easing arthritis, headaches, and back problems. The January 28, 1993 issue of the New England Journal of Medicine contained a widely noted survey by Harvard researcher David M. Eisenberg, M. D., and others on the use of unconventional medicine by the public. The survey found that a third of all respondents had tried such therapies in the past year, mostly for chronic pain or allergies. Dr. Eisenberg was a major figure in the Moyers series. He also has been a steady participant on Office of Alternative Medicine advisory panels. "The people at the Office are involved and sincere, but they have an uphill battle. The NIH was dragged into this by Congress, and the American Cancer Society has put pressure on the program, too. The Moyers and Eisenberg stuff is a very safe way to move forward," said Peter Chowka, an investigative health journalist and a member of two OAM advisory panels, Pharmacological and Biological Treatments, and Information Dissemination. Last September, the OAM brought together about 120 people divided into a dozen subpanels for an advisory committee conference in Chantilly, Virginia. The AIDS community was largely missing from these proceedings. Activists' general lack of contact with the Office has furthered suspicion that the epidemic will be ignored. "After they got the advisory panel together, they didn't do any outreach. Their style is not to ask for input," asserted Bob Lederer of ACT UP/New York's Alternative and Complementary Treatments Committee. One AIDS activist who is a member of the OAM advisory committee is Carola Burroughs of the Brooklyn AIDS Task Force. Her impression is that the OAM definitely is interested in AIDS and cancer. "It's due to cancer activists that we have this at all," she said. "The grant process [which is still under development] seems weighted in favor of AIDS and cancer, all other things being equal." Dr. Eskinazi said that the OAM will make every possible effort to make the grant applications accessible to a wide spectrum of potential researchers, including private practitioners. But who will evaluate grant applications once they come in? Typically the NIH Division of Research Grants sends participants' proposals to the appropriate Study Section, a committee of outside experts, for review. If the OAM's grant proposals are evaluated under the usual norms, the ones selected are likely to be the most medically orthodox, submitted by research organizations with skilled grant writers on their staff. But Dr. Eskinazi says that his office recognizes that standard research methodologies and regulations are not always applicable to alternative medicine. The Division of Research Grants is cooperating with the OAM to set up a special ad hoc evaluation committee sensitive to the needs of unconventional researchers. The Office of Alternative Medicine also is considering sponsoring a conference this year on new research methodologies. Its advisory panel has strongly urged the Office to adopt "outcomes" protocols as a means to evaluate holistic health strategies. Outcomes protocols avoid double-blind clinical trials in favor of documenting how treatments actually perform on patients in normal clinical settings. Outcomes protocols are one way to popularize research, putting it in the hands of patients and their care providers. They also better summarize all the myriad conditions that affect treatment effectiveness in the real world. But not all AIDS treatment activists agree with this idea for changing the way research is conducted. Jon Greenberg, who is part of ACT UP/New York's Alternative and Complementary Treatments Committee, considers most of these concepts little more than anecdotal research without a good statistical basis. "The OAM advisory panel is composed of practitioners without real research experience. It will take them several years to accept the nature of research. Right now, they have a hodge-podge," he said. The Office of Alternative Medicine might not have many years to develop, according to some. One source, who requested anonymity because of his ongoing relationship with the NIH bureaucracy, thought that the OAM is the victim of a kind of malign neglect. This source predicts that the NIH will shut down the Office in a few years on the grounds that its achievements are not of high scientific caliber. Dr. Leanna Standish, Ph.D., N. D., is research director and AIDS investigator at the Bastyr College of Naturopathic Medicine in Seattle. A member of the current OAM advisory panel, Dr. Standish is determined not to let the OAM wither away in this fashion. "Here is this wonderful opportunity to fund AIDS research," Dr. Standish said. "Will it happen or will this be a public relations maneuver? It's only fair to give the Office time to gel, but it's up to the public to insist that it's much, much more [than public relations]." Dr. Eskinazi worries that the OAM will not receive a sufficiently impressive number and range of grant proposals. He thinks that a demonstration of overwhelming interest is the way to ensure the OAM's further growth. Alternative medicine circles have always been suspicious of government intentions, and not without reason. But dismissing the OAM as doomed to failure is a self-fulfilling prophecy. Until now there has been little test the OAM's intentions. The Office is far behind schedule in drawing up its Request for Applications (RFA), so original research proposals could not be entertained until now. The OAM says that the RFA will be ready within days. Interested parties can receive application packets by calling the Office of Alternative Medicine at 301/402-2466. In addition, the Office is organizing day-and-a-half grant writing workshops in Atlanta, Albuquerque, St. Louis and San Francisco during the third week of April. (The first workshop, in Washington DC, took place March 31-April 1.) Workshop reservations can be made by calling Kimberly Farrell of Social and Scientific Systems (OAM's contractor). Ms. Farrell's telephone number is 301/986-4870. ***** AIDS Pathogenesis: Recent Articles On Lymph-Node Infection by John S. James Lymph-node infection by HIV was in the news last month after two independent research articles(1,2) and two commentaries(3,4) were published in Nature, March 25. The findings themselves may have been overshadowed by emotional reactions which went well beyond the data. HIV infection in lymph nodes (which occurs mainly in T- helper cells and macrophages there) is not news, but was described in major papers published at least as early as 1986.(5,6) But the earlier papers found evidence of HIV infection in very few lymph-node cells, with about one in ten thousand or fewer being infected.(5) Clearly this small number could not account for the progression of HIV disease by direct cell killing. The newly-reported work, using better detection methods, found much more infection in lymph nodes, although the numbers varied between research groups and between patients. Embretson and others(2), who studied four patients, found viral RNA (evidence of active infection) in three percent to six percent of lymphocytes and macrophages, depending upon the patient. Viral DNA was found in 16 to 32 percent of the cells; this could indicate either active infection, latent infection which could serve as a viral reservoir and become active later, or defective virus which might not be dangerous. Pantaleo and others(1) looked at 12 patients and compared the proportion of cells infected in the blood and in the lymph nodes. The numbers varied, but usually the rate of infection was at least 10 times higher in the lymph nodes than in the blood. The researchers concluded that "a state of true microbiological latency does not exist during the course of HIV infection. The peripheral blood does not accurately reflect the actual state of HIV disease, particularly early in the clinical course of HIV infection. In fact, HIV disease is active and progressive even when there is little evidence of disease activity by readily measured viral parameters in the peripheral blood, and the patient is experiencing clinical latency." As a result, standard tests of blood (which is easy to obtain) missed the more important infection, which was happening in the lymph nodes. Anthony Fauci, M. D., director of the U. S. National Institute of Allergy and Infectious Diseases (NIAID) and chief of NIAID's Laboratory of Immunoregulation, where much of the work reported by Pantaleo and others was done, said that this work "provides a sound rationale for studies of early treatment strategies, especially with combinations of non-toxic drugs." Drs. Fauci, Pantaleo, and Graziosi recently published a review of HIV pathogenesis.(7) Comment Some have interpreted the newly published results (which are no surprise to scientists, having been presented in conferences during the last year) as implying that antivirals will not work. The reasoning is that all the approved antivirals, and many of those now being tested, are reverse-transcriptase (RT) inhibitors, which only prevent a step in the infection in new cells, but do not target viral activity in cells already infected. The newly-published results show that more T-helper cells than previously known are already infected; therefore, it is too late for the existing antivirals to help them. But all of the new results have found no evidence of infection in a large majority of the susceptible cells; therefore, it seems that the antivirals still have work to do. It has long been understood that there are reservoirs of chronically infected cells which the drugs currently in use do not inhibit; that is why these treatments only work partially. But they do help some people; and the recent studies of "convergent combination therapy" have suggested that combinations of these drugs might be considerably improved. What the lymph-node results should do is to focus more attention on different kinds of treatments, which might work in chronically infected cells where the RT inhibitors do not. These approaches include: * Antivirals to turn off viral activity in infected cells, for example, tat inhibitors; * Treatments to kill infected cells, such as compound Q and others, which are now being tested; * Other therapies which may reduce viral activity indirectly, such as pentoxifylline or NAC; * Therapeutic vaccines of different kinds; * Other immune modulators, such as thymosin alpha 1 plus alpha interferon; and * Various high-tech possibilities, such as antisense and gene therapy. One approach to treatment is to attack the virus directly. Another is to slow the progression of HIV infection, so that the period of clinical latency could last indefinitely -- or at least beyond the normal lifespan, or until better treatments become available. There are many avenues worth exploring. References 1. Pantaleo G, Graziosi C, Demarest JF and others. HIV infection is active and progressive in lymphoid tissue during the clinically latent stage of disease. NATURE. March 25, 1993; volume 362, pages 355-358. 2. Embretson J, Zupancic M, Ribas JL, and others. Massive covert infection of helper T lymphocytes and macrophages by HIV during the incubation period of AIDS. NATURE. March 25, 1993; volume 362, pages 359-362. 3. Maddox J. Where the AIDS virus hides away. NATURE. March 25, 1993; volume 362, page 287. 4. Temin HM and Bolognesi DP. Where was HIV hiding? NATURE. March 25, 1993; volume 362, pages 292-293. 5. Harper ME, Marselle LM, Chayt KJ, and others. Detection of rare cells expressing HTLV-III in primary lymphoid tissue from infected individuals using a highly sensitive in situ hybridization method. BIOCHEMICAL AND MOLECULAR EPIDEMIOLOY OF CANCER. 1986; pages 449-457. 6. Biberfeld P, Chayt KJ, Marselle LM, Biberfeld G, Gallo RC, and Harper ME. HTLV-III expression in infected lymph nodes and relevance to pathogenesis of lymphadenopathy. AMERICAN JOURNAL OF PATHOLOGY. 1986; volume 125, pages 436-442. 7. Pantaleo G, Graziosi C, and Fauci AS. The immunopathogenesis of human immunodeficiency virus infection. NEW ENGLAND JOURNAL OF MEDICINE. February 4, 1993; volume 328, number 5, pages 327-335. ***** Announcements ** March on Washington Lobby Days, April 22-23, 26-27 The lesbian/gay March on Washington is organizing lobbying efforts on Capitol Hill in cooperation with Mobilization Against AIDS, the Human Rights Campaign Fund, and the National Gay and Lesbian Task Force. The focus will be on four legislative issues: the ban on gays in the military, the lesbian and gay civil rights bill, women's health issues, and AIDS funding and research. These organizations are scheduling appointments for people to meet, often in groups, with their legislators or assistants. Groups can be more effective than individual visits, and they also provide a less intimidating atmosphere for first timers. If possible, call ahead of time to the March on Washington office or one of the three organizations coordinating the lobbying (phone numbers below). But you can drop in without prior arrangements to the Bellevue Hotel (Atrium, Packard Grille, and Lexington rooms) #15 E Street NW, near the Union Station Metro stop. Known by the organizers as "lobby central," the hotel will be a place to get information and meet others. Hour- long training sessions will be provided, and there will be debriefing meetings after the Capitol visits. For more information call one of the following: * March on Washington office, 202/628-0493; * Mobilization Against AIDS, 800/24-LOBBY, ask for Adrienne Blum (coordinating Western states); * Human Rights Campaign Fund, 202/628-4160, ask for Kevin Leyton or Mandy Carter (coordinating Southern and Atlantic states); * National Gay and Lesbian Task Force (202/332-6069, ask for Marla Stevens (coordinating Central/Northeastern states). She can also be reached by e-mail to "ngltf" on America Online. ** San Francisco: Health Funding Coalition Meets April 14 The City and County of San Francisco faces an urgent budget crisis at this time. The Coalition for Public Health Services -- consisting of medical, social service, AIDS, gay, religious, homeless, and labor organizations -- has mobilized to prevent or reduce funding cuts for public health in San Francisco. Last year it was effective. But San Francisco's public healthcare delivery has been seriously eroded by budget problems during the last several years. As part of its effort to mobilize the thousands of people that healthcare cuts will affect, the Coalition is meeting on Wednesday, April 14, at 5:30 p. m. at 240 Golden Gate Avenue in San Francisco. For more information, call 415/575-1740. ***** 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 415/255-4659 fax Editor and Publisher: John S. James Medical Reporters: Jason Heyman John S. James Nancy Solomon Reader Services and Business: David Keith Thom Fontaine Tadd Tobias Rae Trewartha 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 1993 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. &&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&& End of display - - - - - - - - - - - - What I have written is my own opinion. From: Ben Gardiner Return address: ben@maggadu.Queernet.ORG -- ben@maggadu.QueerNet.ORG AIDS Info BBS 415)_626-1246 free since July 25, 1985