Subject: AIDS Treatment News #128 Date: Jun 05 1991 (1049 lines) &&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&& J O H N J A M E S writes on A I D S &&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&& copyright 1991 by John S. James; permission granted for non-commercial use. AIDS TREATMENT NEWS Issue #128, June 5, 1991 phone 800/TREAT-12, or 415/255-0588 Contents: [items are separated by "*****" for this display] Travel, Immigration Ban: How You Can Help HIV Travel, Immigration Action Kit Travel, Immigration Ban: Background and Documentation Tat-Gene Drug: Trial Will Begin Widespread Testing: New England Journal of Medicine Statement Misunderstood ***** Travel, Immigration Ban: How You Can Help by John S. James Last week the U. S. Government, overruling the virtually unanimous recommendation of medical and public-health experts throughout the world, continued to ban both immigration and travel by persons with HIV into the United States. This action followed receipt of 35,000 letters and postcards, mostly generated by right-wing religious broadcasters and mailing houses, opposed to removing the ban. Planning for the Eighth International Conference on AIDS, scheduled for Boston in May 1992, is already being disrupted; it is possible that this Conference will never occur. Fortunately, the period for public comment on this issue has been extended for 60 days -- until August 2. After that time, the decision on the travel and immigration ban may be reconsidered. It is vitally important that the AIDS community organize to send tens of thousands of letters and postcards supporting the removal of HIV from the list of contagious diseases which exclude people from entry to the United States. (The U. S. Centers for Disease Control and the Department of Health and Human Services have recommended that only active tuberculosis be included on that list, but because of the right- wing campaign against the proposal, they have been overruled.) Beyond this immediate issue, we must organize to make sure that what has happened now never happens again. Therefore, we are calling on the AIDS community to begin building permanent letter-writing groups, led by individuals who keep in touch with national organizations and, when a call goes out, meet with their friends in brunches, parties, or other social groups, bring all the information, supplies, and other support needed, and help people write their own letters to the necessary politicians and officials. People have been reluctant to write because they fear they do not know enough, or because the activity is solitary and impersonal; ongoing support groups will overcome both problems. Pages two and three of this issue contain our emergency call to action, typeset on separate pages for convenient photocopying and distribution. This self-contained action kit tells how to start ongoing groups, and how to use them now to address the travel/immigration issue. Note that anyone who is willing to speak publicly can help in this way; you do not need to live in a city with existing organizations in order to start. The important thing now is to get letters to the Centers for Disease Control before the August 2 deadline. After the action kit, a longer background article explains what has happened so far in this case. Even after five years of covering U. S. policy on AIDS, we find it unbelievable how badly this issue has been handled. Much of the information we report here has not been widely available, even among AIDS organizations. ***** Next Issue: Florence Coverage Begins Our next issue, originally scheduled for June 21 will be delayed a week because we will be attending the Seventh International Conference on AIDS in Florence, Italy, June 16-21. ***** HIV Travel, Immigration Action Kit On June 1, 1991, the U. S. Department of Health and Human Services (HHS), under great pressure from conservatives, suspended plans supported by virtually all public-health experts and extended the ban on HIV-positive travelers and immigrants entering the United States. The Centers for Disease Control, a branch of HHS, had received 35,000 postcards and letters opposed to ending the exclusion -- most of them generated by right-wing religious broadcasters. In Congress a campaign to keep the HIV exclusion was led by Representative William Dannemeyer (Republican, California). A new public comment period extends for 60 days, until August 2. We must make our voices heard by then. Proposal: Ongoing Letter, Postcard Groups Beyond this immediate issue, we must organize a permanent balance to the massive mail generated by TV hustlers and right- wing mailing lists. We must end the hijacking of public policy by hate artists with their own personal, political, or financial agendas. The reason for the unbalanced mail is that most people are reluctant to write to public officials because they fear that they do not know enough; no such reluctance, however, deters fanatics following instructions from their leader. People need to know that they do not have to be experts to write to their elected representatives or to other public officials. The officials already have access to experts; they also need to know the public's concerns and values regarding how they do their jobs. What is needed to take public policy back from fanatics? We need thousands of individuals throughout the country who will keep informed through contact with national organizations, obtain information packets, and call together friends and associates for postcard and letter-writing brunches, parties, study groups, church meetings, etc. If ten people send five letters or postcards each to different officials on one or more issues, then that one meeting can affect public policy -- especially by giving experts and officials the support they need to do what they know is right. Thousands of people regularly holding such meetings -- either frequently, or only when called in emergencies -- could permanently change the destructive political atmosphere now prevailing in this country. * Anyone, anywhere can organize letter-writing groups; all that's needed is willingness to speak publicly on the issue. The organizer can choose any national group to work with -- without waiting for a local group to get its act together. Almost all other activist and volunteer work is very difficult to begin unless a suitable local group is already functioning -- a small but critical roadblock which keeps thousands of people inactive. * The organizer who sets up the letter writing -- brings the information packets and supplies such as postcards or envelopes, and leads discussion or answers questions when needed -- need not be the same as the one who calls the people together. In fact, an optional letter-writing focus can be provided for a party, meeting, or other event which is happening anyway. * The groups can include persons who are sympathetic but not otherwise involved with AIDS, reaching out to multitudes of potential allies, and building coalitions among healthcare, arts, peace, rights, environment, labor, civic, religious, and other groups. * Besides sending correspondence, the groups can brainstorm about how to involve others -- for example, by using contacts to get information into newsletters or fundraising mailings which may go to thousands of people. (Even tax-exempt organizations usually can spend a fraction of their resources on political work.) Writing to public officials need not detract from other AIDS work. In fact, it can be the first, easiest step to bring in new people who are concerned about issues but not yet active. Few other activities allow people to contribute, with personal creativity if they want, starting the first day of their involvement. Copy this Action Sheet now to help get tens of thousands of postcards and letters to the Centers for Disease Control before August 2. HIV Travel, Immigration: How to Be Heard To be officially counted, your written comment (letter or postcard) must be received on or before August 2. Send it to: Director, Division of Quarantine Center for Prevention Services Centers for Disease Control, Mail Stop E-04 Atlanta, GA 30333 It should ask that AIDS or HIV not be listed as grounds for excluding travelers or immigrants from the United States. It could also ask that Health and Human Services Secretary Louis W. Sullivan adapt, without amendments, the final rule proposed by his department, published in the Federal Register on January 23, 1991. This rule lists only active tuberculosis as a "communicable disease of public health significance" excluding persons from admission to the United States. All comments sent to the office above will be available for public inspection Monday through Friday between 8:30 a.m. and 4:30 p.m. in Room 1327E, 1644 Tullie Circle, Atlanta, Georgia. You might also send postcards or letters to: The Honorable Roger Porter Assistant to the President for Economic and Domestic Policy The White House Washington, DC 20500 Attorney General Dick Thornburgh Department of Justice 10th St. and Constitution Ave., NW Washington, DC 20530 Louis Sullivan, M. D. Department of Health and Human Services 200 Independence Ave., SW Washington, DC 20201 And also to your U. S. Representative and both Senators -- either at their local office, or in Washington; addresses can be obtained from your phone book under U. S. Government listings, or by calling the Capitol switchboard, 202/224-3121. Letters can be addressed to The Honorable (name). Handwritten letters (or individually typed) are best -- especially for elected officials, such as members of Congress. For other government officials, such as those listed above, letters are still best -- but postcards can be almost as good, even those from organizations with preprinted messages on them. All correspondence needs at least your name, address, and signature, and a clear message telling which side you are on. It should be individually mailed; petitions with many names on the same document count less than separate pieces of mail. Reasons for Ending HIV Travel and Immigration Exclusion Note: Your letter or postcard can be as long or as short as you like. Pick one or more of the following reasons -- whatever most appeals to you -- or other reasons. It's best to write in your own words, but it's OK to use our wording if you want. * Health policy should be made by health professionals -- not by politicians and ideologues. Over 100 medical, service, government, religious, and other organizations -- including the American Public Health Association, American Red Cross, and American Foundation for AIDS Research -- are on record in support of the official proposal of Health and Human Services that only active tuberculosis be on the list of diseases excluding persons from admission to the United States. * The great majority of persons who tested positive and now face deportation have lived in the U. S. for over nine years -- required in order to qualify for the immigration Amnesty program for undocumented U. S. residents. Almost certainly they were infected here. Deporting them to all parts of the world, often into areas where HIV is not already present -- and with no thought whatever to prevention services there, let alone treatment -- is unconscionable, a public-health nightmare, certain to help spread the epidemic worldwide and bring the United States into international disrepute. * Advocates of exclusion say it will save money, because HIV-positive immigrants will get AIDS and need to be cared for at public expense. In fact, all evidence points to a miniscule financial impact. Relatively few people are allowed to immigrate to the United States in any case, and of those who have applied so far, fewer than one in a thousand have been found to be HIV positive. The rate of HIV infection is much lower outside the United States than inside it. [For example, immigrant-rights groups have learned that of 84,000 applicants for refugee status who were screened as of about the first of this year, only 23 had tested positive; confirmed figures are not available, however. These tests for refugees were all done at Federal expense.] If possible cost to the government were really the issue, then other diseases such as diabetes, cancer, and heart disease would also be listed as grounds for exclusion. But nobody wants to add them to the list. HIV has been singled out only because of discrimination -- not to avoid public expense. * Continued exclusion of persons with HIV threatens to disrupt the Eighth International Conference on AIDS, the major AIDS meeting of 1992, scheduled for May in Boston; ironically, this meeting's subtitle is "A World United Against AIDS. " Widespread anger at the same policy, in Europe and elsewhere, led to boycotts of the San Francisco Conference in June 1990 by dozens of government and non-government organizations, and probably thousands of individuals. It is the policy of the International AIDS Society, a major sponsor of the annual Conferences, not to sponsor them in countries which do not allow free travel of delegates. * What about a compromise to allow short-term travelers but not permanent immigrants? This would still deport people infected in the United States to countries throughout the world -- an unconscionable "AIDS export policy." Few AIDS organizations would support such a plan. And it would probably be impossible under current law, which has no provision for keeping two lists, one for visitors and one for immigrants. * Exclusion of HIV-infected immigrants or travelers gives people the wrong messages: that AIDS is casually contagious; or that one can protect oneself by avoiding certain people, instead of avoiding high-risk behaviors. * Exclusion of foreigners by the U. S. will likely lead to retaliation by other countries against U. S. citizens -- including persons with HIV traveling abroad for medical treatment, or to attend AIDS conferences. * Such exclusion policies give people all over the world a reason not to be tested for HIV. If no one knows they are positive, they can cross international borders with very little chance of any challenge. What's important now is to get postcards and letters to the Centers for Disease Control -- and other public officials if possible -- before August 2. You can assist by writing your own letter, then helping your friends and associates write theirs. National Organizing: Where to Call In the two weeks since the public learned that the travel and immigration ban would continue, several organizations have begun national campaigns to support the recommendation of the Public Health Service that persons with HIV not be excluded from the United States. These are the national campaigns we know about at press time: * National Gay and Lesbian Task Force, in Washington, D. C., has called for an International Day of Action on or about June 26; demonstrations will be held in U. S. cities and abroad. NGLTF is also asking people to write letters to the Centers for Disease Control. For more information, call Robert Bray or Urvashi Vaid, 202/332-6483. (NGLTF will also hold a June 25 town-hall meeting in Washington, D. C. on international gay, lesbian, and AIDS issues.) * Mobilization Against AIDS, in San Francisco, is starting a national postcard and education campaign. For more information, call Ken McPherson, 415/863-4676. * AIDS Action Council, in Washington, D. C., is also asking people to write letters. For more information, call 202/293- 2886. * Human Rights Campaign Fund, in Washington, D. C., is sending postcards to all its members, starting a letter-writing campaign in 25 areas of the U. S., and using its "Speak Out" political-message program. For information, call 202/628-4160. ***** HIV Travel/Immigration Ban: Background, Documentation by John S. James This background article addresses two different audiences. It is both an introduction for persons not familiar with AIDS and the HIV exclusion issue, and also a resource for activists; it includes information not generally available or not published before. Chronology * The U. S. Public Health Service (PHS) has long maintained a list of "dangerous and contagious diseases," mostly sexually- transmitted diseases, for excluding persons for public-health reasons from the United States. This list is widely regarded as obsolete by health experts. * In June 1987 the PHS, under pressure from President Reagan, added AIDS to the list, but noted that the exclusion was not based on any new scientific knowledge and that "AIDS is not spread by casual contact which is the usual public concept of contagious." * In July 1987 the "Helms amendment" by Senator Jesse Helms (Republican, North Carolina) added HIV infection to the exclusion list. Because AIDS was already on the list, Congress thought the change was not important, and through a political compromise the amendment was passed unanimously in the Senate. Later, however, it would be argued that since Congress had put HIV on the list, only Congress could take it off -- although in regard to all other diseases, the list was maintained by the PHS. * In April 1989 Dutch AIDS educator Hans Paul Verhoef, on his way to an AIDS conference in San Francisco, was detained in Minneapolis by the U. S. Immigration and Naturalization Service (INS), an arm of the Department of Justice, when AZT was found in his luggage. Through legal action by the conference organizers, a waiver was obtained, but only when the conference was ending. The AIDS community then realized that the June 1990 Sixth International Conference on AIDS in San Francisco, the major scientific meeting on AIDS in the year, could be disrupted because persons with HIV would be unable to travel to San Francisco to attend. A year's effort by the Conference organizers and the AIDS community failed to end the ban; various waiver rules were devised, but there were problems with them. Because of the travel ban, over 70 AIDS, medical, and government organizations, including the International Red Cross, the British Medical Association, and the European Parliament, boycotted the meeting. Although the Conference organizers sent waiver instructions to potential delegates and organized legal panels in case of problems at the border, it is likely that thousands of people stayed away; thousands of others demonstrated at the San Francisco meeting. As a result of this experience, Harvard University, which had been selected to organize the May 1992 Eighth International Conference on AIDS in Boston, announced that it would withdraw its sponsorship unless persons with HIV were able to travel freely to attend. * In March 1990 public-health experts at the U. S. Centers for Disease Control recommended that all diseases except active tuberculosis be removed from the list of excludable conditions; HIV was left on the proposed list because it had been put on by Congress. The Public Health Service never acted on this proposal. * In November 1990 the Immigration Reform Act of 1990 was signed. It directed the CDC to establish a new list of excludable conditions, based solely on "current epidemiological principles and medical standards," by June 1, 1991. * On January 23, 1991, the CDC published in the Federal Register its proposal that only active tuberculosis remain on the list of excludable conditions. (Other provisions of the law allow exclusion of persons with a dangerous mental disorder, one who abuses drugs, or one likely to become a "public charge," i.e., to require government assistance. These sections have not been involved in the HIV controversy, however.) * During a 30-day public comment period on this proposed rule, right-wing religious leaders generated 35,000 postcards and letters opposed to removing the HIV exclusion. And in Congress a letter from the Republican Study Committee, circulated by Representative William E. Dannemeyer (Republican, California) and signed by 67 members of the House of Representatives, opposed removing the ban. Opponents focused their arguments on immigration, not on travel, although for technical legal reasons it will be difficult to separate the two without new legislation, meaning that if the list proposed by the PHS (excluding only active tuberculosis) is not accepted, the travel ban will also continue. * About a week before the June 1 deadline, a major dispute surfaced between the U. S. Department of Health and Human Services (HHS) and the U. S. Department of Justice; the latter opposed removing HIV from the list. Until shortly before that time, no one in the AIDS community had known that the Department of Justice was involved in the issue; the law clearly gives sole authority to establish this list to HHS. But politically, although the two departments have theoretically equal Cabinet rank, Justice is closer to the White House, and therefore likely to win a dispute; in addition, the 35,000 letters opposed, and the letter from 67 members of Congress, gave it additional advantage. * Because of this conflict between Federal departments, an interim rule was put into effect last Saturday, June 1, and a new public comment period was extended for 60 days. The interim rule keeps the current exclusion list, including tuberculosis, HIV, and a number of other diseases, and keeps the waiver provisions negotiated in advance of the June 1990 International Conference on AIDS in San Francisco. However, this "interim" rule will not expire after the 60 days. It will remain indefinitely until replaced by another rule. Without an outpouring of public support for removing HIV from the list, the PHS will be reluctant to implement the decision -- even one unanimously supported by medical and public-health experts. The current policy will continue -- including the travel ban, which will affect the May 1992 International Conference on AIDS in Boston. Also continuing will be the deportation of HIV-positive applicants under the immigration Amnesty program, who have lived in the United States for at least nine years and almost certainly were infected here -- a policy which will certainly bring disrepute onto the United States. The Opposition Who is opposed to the PHS proposal to remove HIV from the list? What are their arguments? Three sources of opposition have surfaced: the 35,000 pieces of mail opposed, the 67 members of the House of Representatives, and the Justice Department. We will look at each in turn. 1. The Mail Campaign According to a health department official quoted by The New York Times (May 26, page 1), much of the mail was generated by an evangelical broadcaster. We have not seen any of the broadcasts (we have heard there were a number of them), but we have received a copy of a mailing from the Christian Action Network of Forest, Virginia. The mailing opens -- even above the salutation -- with the following: "Are there not enough homosexuals with AIDS in the United States that we now need to import more? "That's exactly what's happening -- more homosexuals, more AIDS, more death being brought to the United States -- thanks to the liberals within the Department of Health and Human Services." After the inside address -- positioned for a window envelope -- and salutation (Dear Mrs.______) -- the message continues: "I have but 30 days remaining to stop the Health and Human Services from approving a new policy that will allow homosexuals with AIDS to immigrate to the United States. [underlining in original] "But as president of the Christian Action Network, I desperately need your help. "Please sign the enclosed postcard to HHS Secretary Dr. Louis Sullivan and mail it back to me at once. There's no time to lose. You and I must act today if we want to win this battle. "Your postcard demands that HHS Secretary Dr. Louis Sullivan abolish a new policy which would allow homosexuals with AIDS to immigrate to the United States. "And I need your postcard to help me convince Dr. Sullivan that Americans like you are outraged. "Without your signed postcard, HHS will surely cave-in to the demands of the militant homosexuals. "Never before in the history of the United States have homosexuals been allowed to immigrate to our blessed land. "And never before have AIDS patients been allowed to immigrate to the United States. "But now -- even while this deadly disease ravages our land -- the United States is considering a proposal that would... "...ALLOW HOMOSEXUALS WITH AIDS TO FREELY ENTER OUR COUNTRY AND SPREAD THEIR DISEASE TO UNTOLD THOUSANDS MORE AMERICANS." Three pages later: "Yes, those liberals and homosexuals would gladly throw us out while they open America's doors to homosexuals with AIDS. "I'm angered and I'm ready for action. "But I need your postcard to help me in my battle to keep homosexuals with AIDS out of America. "I want to go before HHS Secretary Dr. Louis Sullivan and present him with your postcard. And I want Congress to know about your anger. "I want to contact conservative opinion leaders in the media about your outrage. "I want to lobby the halls of Congress. "But first I need your signed postcard and whatever gift you can afford." The rest of the mailing is mostly about money. 2. Congressional Opposition The letter below, on letterhead of the Republican Study Committee and signed by 67 Republican members of the U. S. House of Representatives, opposes changing the HIV entry ban. We reproduce it here so that the AIDS community will know what arguments are being made. The two sides of this dispute have talked to each other so little that even though this letter was sent last February, we had to obtain our copy directly from the Republican Study Committee, as we could not find any AIDS organization which had one. We also reproduce the letter because of ongoing confusion, and possible misrepresentation, of the position of the American Medical Association. The Republican letter states that "The AMA agrees that HIV-infected individuals should not be permitted to immigrate." This directly contradicts the official position of the AMA, stated in a recent letter to Senator Kennedy, that "The AMA has always opposed restrictions on HIV-infected immigrant travelers to the United States." How many of the 67 Representatives would have signed the Republican letter on health policy if they had known that there was no medical or public health authority in support of its position? Note also that the figures from the Orange County Department of Health, included in the letter, refer to the immigration Amnesty program. As we pointed out above, in order to enter the Amnesty program, these people needed to be living in the United States for at least the last nine years, and therefore they were almost surely infected here. The $3 million dollar cost estimate assumes that all of them get sick and die of AIDS -- 100 percent at public expense. And it ignores the damage to the U. S. in world opprobrium, as persons infected here with HIV are deported to many countries throughout the world. Also note that this letter distinguishes travelers and tourists from permanent immigrants, and argues only for excluding the latter. But the law gives HHS no authority to make such a distinction -- although that is what, "at a minimum," the letter asks HHS to do. It is easy to argue against foreigners with HIV immigrating to the United States, so this is the argument which is used. But the practical effect is to exclude travelers, too. The first sentence is also worth noting -- since the Justice Department now claims the authority to stop HHS from removing HIV from the list. Not even the 67 Congressmen who oppose the HHS position understood the law that way. "Dear Secretary Sullivan: "As you know, under the new immigration law passed last Congress, you have the discretion to revise the list of diseases used to exclude prospective immigrants who test positive for one or more communicable diseases. For the disease to be removed from the list, you must determine that is not a "communicable disease of public health significance." [word 'it' omitted in original] "The Federal Register, dated January 23, indicated that you are ready to remove HIV infection as well as other sexually transmitted diseases from the list. These reports come at a time when the American Medical Association Report of the Board of Trustees recently stated that: "1. The worldwide failure to substantially slow the pace of HIV infection, and reports in the United States of relapse in prevention behavior, give a mixed outlook for the 1990's. "2. No major scientific or medical breakthroughs occurred in the last year. "3. The AMA agrees that HIV-infected individuals should not be permitted to immigrate. "The American Medical Association concluded that all immigrants should be tested for the AIDS virus. Their recommendation states: "That the AMA support mandatory AIDS testing of...immigrants to the United States." The report noted that immigrants "have historically undergone a health assessment before admission into the citizenship process." The exclusion of testing "would be a change in a logical long-standing U. S. policy and difficult to justify on medical, scientific, or economic grounds." "We are writing to inform you of our strong opposition to this proposed change in law for the following reasons. "First we believe that the HIV carrier who is unaware of his infection poses the same public health risk as the carrier of an airborne communicable disease like tuberculosis. As you know over 90% of those carrying the AIDS virus do not know their serostatus, and therefore have absolutely no reason to change their behavior. "When the Ryan White bill became law last year, it provided hundreds of millions of dollars for assistance to selected cities hardest hit by the AIDS epidemic. This is a first for the government to provide aid for the effects of a single disease, $350 million in 1991 alone. The bill's proponents argued, in the words of one congressman, that "the AIDS epidemic is decimating the economic, medical, and human resources of many U. S. cities." A recent study by the National Association of Public Hospitals stated that the number of AIDS patients surveyed more than tripled between 1985 and 1988. The strain caused by the rise in AIDS patients, among other factors, are [error in original] causing the nation's urban public hospitals to crumble according to the survey. Now, only months after the Ryan White bill, the proposed policy seems to suggest that HIV infection is insignificant for public health purposes. "We appreciate that proponents of this policy change are concerned about the exclusion of travelers and tourists. Our concern lies not with visitors, but with those who wish to permanently reside in the United States. It would be nearly impossible to screen visitors to the U. S. for HIV since there were more than 210 million lawful border crossings in FY1988 alone. Immigrants who are unaware of their infection would likely infect others and will require an average of $75,000 in medical care over their lifetimes, occupying physicians' time and hospital facilities already in short supply. At a minimum, the HHS policy should draw this distinction between visitors and immigrants. "The overall economic cost of allowing HIV infected immigrants into the U. S. will be significant. Orange County Department of Health in California reports that .5% of all those tested pursuant to the immigration amnesty program have tested positive for HIV, 38 individuals in all. At $75,000 per person, that amounts to nearly $3 million in health care costs in Orange County alone. "The timing of the proposed change is curious in light of the acceptance by more and more medical organizations and public health officials of the importance of early diagnosis of HIV infection. They all agree that the earlier individuals know their serostatus, the better off we all are. It goes without saying that those immigrants tested for the HIV infection and who are found positive should also be expelled. Because this proposed policy jettisons the requirements that immigrants be tested for HIV, it promotes ignorance rather than knowledge. "We urge you to withdraw this proposed change at the earliest possible opportunity." [signed by 67 Republican members of the U. S. House of Representatives] Dannemeyer Background Congressman William Dannemeyer led the opposition in the House to ending the HIV exclusion. While his positions on AIDS are well known, few know that Dannemeyer is perhaps the only member of Congress in U. S. history to have authored a book on homosexuality: Shadow in the Land: Homosexuality in America, published by Ignatius Press, San Francisco, 1989, $19.95, paperback $9.95. Sample passage: "The story of how homosexuality was declared 'normal' by the American Psychiatric Association is one of the most depressing narratives in the annals of modern medicine. Indeed, it is difficult to contemplate the details without wondering if our society is not in a state of advanced deterioration." (page 24) Over 40 pages are devoted to the chapter on AIDS and public policy. Its five subchapters (representing Dannemeyer's "own list of priorities") are "Widespread Testing," "Reporting," "Contact Tracing," "The Restoration of Laws against Sodomy," and "The Rejection of Antidiscrimination Laws." Ken McPherson, Special Projects Coordinator for Mobilization Against AIDS in San Francisco, describes Shadow in the Land as the blueprint for what the right wing has been doing on homosexuality for the last year and a half. On a different health issue, Dannemeyer has fought for years against Federal and California efforts to ban sales of raw milk products as a health hazard. Major news reports on his role in this issue are "Dannemeyer Goes to Bat for Raw Milk," Los Angeles Times, February 2, 1991, and "Judge Curbs Raw-Milk Sales as HHS Fails to Act," The Washington Post, January 7, 1987. According to the Post, the regulatory dispute over interstate sales of raw milk had lasted 13 years. In 1983 Dannemeyer got 34 members of Congress to sign a letter opposing the proposal to ban interstate sales; Dannemeyer was a former general counsel for Alta Dena Dairy, the nation's largest interstate distributor of raw milk products. In 1987 a Federal judge ruled that Margaret M. Heckler, then Secretary of Health and Human Services, had acted in an "arbitrary and capricious manner" in disregarding safety data, and ordered the Department to impose the interstate ban. The sale of raw milk products is still allowed in California and in some other states. Congressman Dannemeyer recently became the ranking Republican on the Health and Environment Subcommittee of the U. S. House of Representatives. 3. Justice Department Opposition Of the three sources of opposition to ending the HIV exclusion ban, the U. S. Department of Justice has been the most influential. It is also the hardest to report about, because so far as we can determine, nobody involved with AIDS has been able to communicate with the people in the Department who are making the decisions.In fact, until about three weeks ago, no one in the AIDS community seems to have known that the Justice Department had any special interest in the issue of HIV exclusion. We called the office of Deputy Attorney General William P. Barr, described in a New York Times article as the leader of the effort in the Justice Department to exclude persons with HIV, and were referred to the press office. None of our calls to that office have been returned. Since no representative of the Justice Department will speak with AIDS TREATMENT NEWS, we will report the Department's position from press coverage; several informative articles have appeared. The major report on the Justice Department role appeared May 28 in The New York Times: "Health Department Loses in AIDS Rule Dispute," by Robert Pear. The Justice Department case, as described in this article, is: * That HHS Secretary Sullivan may not have adequately documented his conclusion that AIDS is not "a communicable disease of public health significance." * That Sullivan had not consulted any senior officials in the Justice Department when making the decision, even though the Immigration and Naturalization Service, within the Justice Department, would enforce the exclusion list. [However, a January 14, 1991, report in Modern Healthcare said that Sullivan was seeking comment from both the Justice Department and the State Department on the proposal to revise the list of conditions requiring exclusion -- even before publishing the proposal in the Federal Register.] * "After receiving a torrent of public comments criticizing the proposal" [the right-wing mail campaign illustrated above], HHS officials said that the Justice Department could use another provision of the law, the "public charge" section, to exclude persons likely to cost the government money for medical expenses. "But Justice Department officials led by Deputy Attorney General William P. Barr argued that it was completely impractical for an immigration examiner to make a sophisticated analysis of an alien's infection and health insurance coverage to determine whether that person might become a public charge in 05 or 10 years." According to a May 30 report by the Associated Press, "One administration source said the Justice Department it will take 60 days to make the list' of its objections." Questions for the Justice Department Since we cannot reach any spokesperson for the Department, we will publish here the questions we would ask if we could: * What is the legal basis for the Justice Department overruling the Health and Human Services on the content of the list of excludable conditions? The Immigration Reform Act of 1990 explicitly names HHS alone as having authority to create that list. * Has the Justice Department consulted with any AIDS or public-health experts whatsoever before deciding to block the HHS plan to follow the recommendations of its U. S. Centers for Disease Control and list only active tuberculosis as an excludable condition? * Does the Justice Department have any statistics indicating that there could be a substantial cost to the government of the new policy -- or contradicting the figures we presented above showing that the number of persons who acquire HIV abroad and then try to immigrate to the United States is minimal? * Can the Justice Department reconcile the January report, cited above, that Dr. Sullivan asked for its comments even before publishing the HHS proposal in the Federal Register, with the New York Times story, also cited above, which quoted Justice Department officials as saying that Sullivan had not consulted "any senior official" in that Department? * Is the Justice Department behind an apparent attempt to use another section of the immigration law, the mental health section, to exclude persons with HIV on mental-health? The interim rule published Friday, May 31, includes the following paragraph: "In addition, we solicit comment as to whether and, if so, to what extent section 212(a)(1)(A)(ii)(I) provides a legal and policy basis for excluding classes of aliens not excluded by this interim final regulation." (Federal Register, May 31, page 25001.) Here is the relevant section of the law (the Immigration Reform Act of 1990, Section VI, Exclusion and Deportation): "(A) IN GENERAL. -- Any alien -- "(i) who is determined (in accordance with regulations prescribed by the Secretary of Health and Human Services) to have a communicable disease of public health significance, "(ii) who is determined (in accordance with regulations prescribed by the Secretary of Health and Human Services in consultation with the Attorney General) -- "(I) to have a physical or mental disorder and behavior associated with the disorder that may pose, or has posed, a threat to the property, safety, or welfare of the alien or others..." Note that the law gives sole authority to Health and Human Services to write the regulations on "communicable disease of public health significance" -- where the issue of excluding persons with HIV has been fought so far. But section (ii)(I) gives authority to Health and Human Services "in consultation with the Attorney General" -- the head of the Justice Department -- to write the regulations. AIDS TREATMENT NEWS has been told that the paragraph quoted above from the May 31 Federal Register was included because some people want to use it to list specific conditions, especially HIV infection, in that section. This would create a second exclusion list, separate from the list of communicable diseases. At present, the mental-health section does not list any specific conditions -- but in previous years, both homosexuality and epilepsy have been listed as mental diseases automatically excluding foreigners from entering the United States. Attaching a list to the "physical or mental disorder" section could give the Justice Department an end run around the current debate. The law explicitly gives HHS the sole authority to determine the communicable-disease list, and the Justice Department has temporarily overruled HHS only through political power. If HHS does not back down, and if President Bush is unwilling to order it to list HIV as a communicable disease, or to fire and replace HHS Secretary Sullivan, then the Justice Department might still accomplish the exclusion of persons with HIV from the United States by adding a separate list to the "physical or mental disorder" section, where the Justice Department does have a legally mandated role in developing the regulations. Note: As we went to press, it was announced that the head of the Justice Department, Attorney General Dick Thornburgh, will resign in a few weeks to run for Senate in Pennsylvania. A page-one article in The New York Times (June 5) called his running for the Senate "the chance to make a graceful departure from a troubled tenure as an Attorney General." We do not know whether or how this change will affect the dispute with Health and Human Services on AIDS. Comment: A Pervasive Hostility Ten years after its discovery, AIDS has killed well over 100,000 Americans, and endangers the lives of about one million more. A community has developed among thousands of dedicated volunteers and professionals working in the epidemic. Most of us have lived through the deaths of dozens of personal friends. And for ten years, this emergency team has faced a pervasive institutional hostility. This hostility is notable in that it is typically expressed not personally, but by use of official positions and powers in destructive ways. It is seen in the U. S. Department of Justice, which in the last three weeks has muscled its way into AIDS to sabotage reforms overwhelmingly supported by public-health experts throughout the world -- without even discussing its plans with those who have fought this epidemic for years, or examining the data gathered by its own Immigration and Naturalization Service, or reviewing the impact of the ban on scientific and medical conferences. In cancer or any other disease except for AIDS, it would be inconceivable for a non-medical Federal agency to unilaterally impose a major policy decision, with no discussion at all with experts or others involved -- and, as far as we can tell, with no medical input whatever. The question arises as to what the AIDS community could do to bring the ongoing hostility to an end, to better work together as a nation and a world to control this national and world epidemic. It is hard to find an answer. The hostility keeps coming no matter what we say, do, or are. Being passive and silent, as if to avoid upsetting people, is not a workable solution. We can only do what we have done before, to work and to fight as best we can. Some day the future may be different. ***** Tat-Gene Drug: Trial Will Begin AIDS TREATMENT NEWS #127 reported that Hoffmann-La Roche had indefinitely postponed a small trial of its tat-gene inhibitor, code-named Ro 24-7429, the only drug of this class being developed. The trial had been cancelled for business reasons; there were no scientific or medical grounds to abandon the drug. On May 29 the company announced that it lifted its hold on the trial, which will be conducted at Johns Hopkins University. It still wants to license this drug to another company, but will conduct the phase I study in the meantime. We have heard that the trial is being redesigned to collect some efficacy information, which apparently had not been planned before. The entry criteria will probably remain the same, so that persons who qualified for the earlier trial may also be eligible for this one. Design changes are being kept small, in order to facilitate approval of the new trial by the FDA. ***** Widespread Testing: New England Journal of Medicine Statement Misunderstood by John S. James A statement in the May 23, 1991, New England Journal of Medicine, supporting "routine" HIV testing of physicians, hospital patients, and others, has been widely misinterpreted as an endorsement by the influential Journal of moving away from the policy of voluntary HIV testing with informed consent. (See, for example, "Medical Journal Urges Routine AIDS Testing," Los Angeles Times, May 23, page 1.) In fact, according to a report being published this week in American Medical News (published by the American Medical Association), the "editorial" does not represent the position of the New England Journal or of its editor, Arnold Relman, M. D., but only the personal opinion of its author, Marcia Angell, M. D., a senior editor on the staff. Dr. Angell is not regarded as an expert on AIDS. A source familiar with the New England Journal told us it is "inconceivable" that it would publish as an editorial the personal views of a staff editor who is not an expert on the subject addressed -- and that it may have happened this time because of a leadership transition at the publication, with Dr. Relman retiring in July. The two-page editorial never mentions counseling, considered essential by public-health experts when people are given their HIV test results. Dr. Angell told American Medical News that "I think counselling is rather overrated, although I have no objection to it." ***** Statement of Purpose AIDS TREATMENT NEWS reports on experimental and complementary treatments, especially those available now. It collects information from medical journals, and from interviews with scientists, physicians, and other health practitioners, and persons with AIDS or HIV. 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. We also examine the ethical and public-policy issues around AIDS treatment research and treatment access. [Obsolete subscription information has been removed. See the latest issues for up-to-date information. -- sysop] &&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&& End of display