From: Billi Goldberg <bigoldberg@igc.apc.org>
Subject: ATN #158
Note: Copyright 1992, Dan R. Greening. Non-commercial reproduction allowed.
Archive-Number: 6179
Organization: unspecified
Date: Mon, 14 Sep 92 08:55:39 PDT

&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&& 
J O H N   J A M E S  writes  on  A I D S 
&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&& 

Copyright 1992 by John S. James; 
permission granted for non-commercial use. 

AIDS TREATMENT NEWS Issue # 158, September 4, 1992 
   phone 800/TREAT-1-2, or 415/255-0588 

CONTENTS:  [items are separated by "*****" for this display] 

Nutrition at VIII International Conference on AIDS 
Leads on New Drugs:  Published-Only Abstracts from 
International AIDS Conference, Basic Science Track 
What Could the White House Do to Fight the AIDS Epidemic? 
Announcements 
   Political Funeral at White House, October 12 
   ACT UP White House Demonstration, Noon October 12 
   The Names Project AIDS Memorial Quilt Washington, D. C., 
      October 9-11, 1992 
   Hurricane Andrew Relief for People with AIDS 
   Rifabutin for MAC Prevention:  FDA Hearing September 24 
   In Memoriam:  Ron Woodroof 

***** Nutrition at VIII International Conference on AIDS 

by Jason Heyman 

     The role of nutrition in AIDS was addressed in only one oral 
session during the VIII International Conference on AIDS, and it 
was cancelled until activist pressure succeeded in forcing 
conference organizers to reinstate it.  Approximately thirty 
papers relating to nutrition were included in the published 
abstract books.  These papers cover a variety of topics including 
malnutrition, wasting, and current research into vitamin 
deficiencies and nutritional supplementation in HIV infection. 
[Reference numbers below refer to the abstract numbers in these 
volumes.] 

     The oral session, "HIV and Nutrition," moderated by Elinor 
Levy, M. D., of the Boston University School of Medicine, 
included presentations by three clinical researchers and by Rainy 
Cheeks, the director of a community organization, Us Helping Us, 
in Washington, D. C. 

     Mr. Cheeks has successfully used nutrition and alternative 
therapies in his own treatment, stressing a common-sense approach 
to diet as the foundation for all medicine.  He discussed the 
treatment of certain symptoms and infections with nutritional 
supplementation and dietary change, and challenged researchers to 
bring their work to a level where it can be applied to the day to 
day lives of people with HIV and AIDS.  Drawing from his own 
experience, he explained how educating yourself about nutrition 
is the most fundamental way of taking charge of your own health 
care. 

Current research 

     During the oral session, Richard Beach, M. D., from the 
University of Miami School of Medicine, discussed the state of 
nutrition in asymptomatic HIV-positive individuals.  He found an 
increased resting energy expenditure (the amount of energy your 
body uses while in a relaxed state) in asymptomatic people with 
HIV.  This appears consistent with reactions seen in most types 
of infection, except that it may have a different mechanism of 
action in the case of HIV infection.  These findings were similar 
to those of a study at St. Luc University Hospital, Brussels 
[abstract #PuB7569], and research done by another panelist, J. T. 
Hommes, M. D., of the Academic Medical Center in Amsterdam. 

     The panelists agreed that nutrient supplementation can be an 
effective prophylaxis against many kinds of infection, and 
discussed how common nutrient deficiencies are in people with HIV 
and AIDS.  Dr. Beach stated that 20 to 40 percent of the 
asymptomatic patients he studied had abnormally low plasma levels 
of riboflavin, vitamins A, B6, C, E, zinc, and copper. Twenty 
five percent of the patients had a vitamin B12 deficiency 
[PuB7318] and were found to have low scores when tested for 
information processing speed, and visual/spatial ability.  Upon 
normalization of B12 levels, performance in these areas 
normalized.  A lack of vitamin B6 was directly correlated to 
decreased immune system activity.  [Related work:  PuB7126]. 

     Research into nutritional status as a surrogate marker was 
carried out at the Graduate Hospital, University of Pennsylvania, 
Philadelphia [PoB3695, and PuB7113].  These papers show a 
correlation between nutrient deficiencies and disease 
progression.  Nutrition can also alter the efficacy of other 
treatments; according to Dr. Beach, "patients who were put on AZT 
who had low plasma zinc levels did not do nearly as well on the 
drug as those who had normal plasma levels of zinc...In the 
original studies of AZT they found that B12 deficiency correlated 
with an increased incidence of side effects from the drug.  So 
both the efficacy and the tolerance of antiretrovirals can be 
influenced by nutritional status." 

     He cautioned that there is some question as to the practical 
use of zinc since some studies have shown that large amounts can 
suppress the immune system.  Low plasma zinc levels are a natural 
response by the body in the face of infection, and might have a 
beneficial effect such as slowing viral replication. 

     Dr. Beach's group at the University of Miami School of 
Medicine proposed that vitamin B6 deficiency is directly related 
to anxiety and depression in early HIV infection [PoB3711].  They 
also gave recommendations for nutrient supplementation in early 
HIV infection [PoB3675], suggesting that HIV-positive individuals 
consume more than the RDA (the U. S. Food and Drug 
Administration's Recommended Daily Allowance) of many nutrients, 
to maintain adequate blood levels.  They made interim 
recommendations for vitamins A, B2, B6, B12, C, and E, and for 
zinc.  (Selenium deficiencies have also been found in HIV 
infection [PuB7336].) 

     Three papers were submitted on vitamin A, including research 
from St. Vincent's Hospital in New York which showed that people 
with AIDS commonly have a vitamin A deficiency [PoB3698]. 
Researchers from the National University of Rwanda discovered a 
relationship between low maternal vitamin A levels and fetal 
death [PoC4221].  The immunostimulatory effects of beta-carotene 
(a vitamin A precursor, which is safer to use than vitamin A 
itself) were studied at Yale University School of Medicine in New 
Haven [PoB3458].  In this study, half the patients had an 
increase in T-helper cells while taking 120 mg. of beta-carotene 
per day.  Upon discontinuation of therapy patients returned to 
previous T- helper levels. 

     Joan Priestley, M. D., a physician from Los Angeles, 
presented a poster abstract on an observational study of a 
nutrient replacement therapy she uses with her patients 
[PoB3710].  She reported that nutrient supplementation helped 
patients maintain stable body weight, enhanced quality of life, 
and even extended survival time. 

     [Other related abstracts:  nutritional markers PoB3708; body 
composition PoB3840, PoB3693, PuB7175; community projects and 
risk factors:  PoB3705, PuC8119, PoD5285, PoD5252]. 

Malnutrition and AIDS 

     "It is well known that the function of the immune system is 
influenced by the nutritional status," stated Dr. Hommes. 
Malnutrition has been shown to weaken the body's ability to fight 
infection, "resulting in increased susceptibility to infectious 
diseases with increased morbidity and mortality."  Similar 
findings were presented in a poster abstract from the Clinique 
des Maladies Infectieuses, Grenoble, France [PoB3701]. 

     Donald Kotler, M. D., from the Task Force on Nutrition 
Support in AIDS, St. Luke's-Roosevelt Hospital, New York, spoke 
during the oral session about the lack of research on the impact 
of malnutrition on AIDS pathogenesis.  Malnutrition in people 
with HIV can be caused by a variety of things, including 
insufficient food intake and metabolic and absorption 
abnormalities.  Studies have demonstrated that appetite 
stimulation and enteral feeding (through a tube) can lead to 
increased body weight.  The correct application of these 
treatments is not clearly understood.  Dr. Kotler has also 
researched physical conditioning (exercise), which he has found 
to improve quality of life, and which may be the least expensive 
way of making up for the adverse effects of weight loss [PuB7395 
and PoB3401]. 

     A number of papers addressed the use of nutritional 
interventions:  counseling and prescribed diets [PoB3676], growth 
hormone therapy [PoB3835], parenteral nutrition [PoB3694, 
PuB7265], nutritional formulas [PoB3696], prevalence of 
nutritional interventions [PoB3699], and appetite stimulation 
using Dronabinol (marijuana extract) and Megace (megestrol 
acetate) [PoB3687, PuB7442, PuB7505, PuB7531]. 

Developing Countries 

     Dr. Beach estimated that one billion people, one quarter of 
the world's population, are malnourished.  "Most of the new cases 
of HIV infection are occurring in the third world, and they are 
occurring in areas exactly where that malnutrition is 
particularly endemic...So, even if we have an HIV vaccine 
somewhere down the road we are going to have to pay attention to 
the nutritional status of the people who are getting that 
vaccine." 

     In Africa, AIDS was originally referred to as "slim disease" 
because wasting is one of the most common symptoms of HIV 
infection in developing countries.  "The triad of diarrhea, fever 
and weight loss are the three principal symptoms you see 
everywhere in the third world," and they are directly related to 
the malnutrition of those who become HIV-infected.  People who are 
malnourished are more susceptible to infection by HIV, so the 
cycle of poverty and disease continues unabated. 

Note: 

 Other nutrition abstracts address:  gastrointestinal function 
[PoB3839, PoB3690, PuB7106], and diarrhea [PoB3333, PoB3340, 
PoB3348, PoB3725, PuB7155]. 

***** Leads on New Drugs:  Published-Only Abstracts from 
      International AIDS Conference, Basic Science Track 

by John S. James 

     Almost five thousand abstracts were submitted to the VIII 
International Conference on AIDS/ III World STD Conference (held 
in Amsterdam, July 19-24, 1992).  The ones considered most 
important by the teams which put the program together were 
scheduled for presentation in the oral sessions (often with eight 
to ten different sessions running simultaneously), or as poster 
presentations, with researchers given numbered board spaces on 
which they could post whatever information they wanted, and 
scheduled times to try to be there to talk with anyone who wanted 
to meet them.  But due to time and space limitations, there were 
about a thousand submitted abstracts which were judged worthy of 
publication but could not be scheduled for presentation in 
Amsterdam.  These were published in a separate volume of the 
three-volume set of conference abstract books, which was given to 
everyone who attended. 

     Each year these published-only abstracts from the 
international conference include important information, but are 
largely ignored.  The reports are important, even though they did 
not make the cut as oral talks or as posters, because with 
something as rapidly changing and poorly understood as AIDS, no 
one, including the reviewers who selected the abstracts, can know 
what will prove valuable in the future; the most innovative 
leads, being unfamiliar, can end up in the published-only book. 
(We also noticed a number of high-tech research reports from 
Moscow in that volume.  They may have missed a higher rating 
because reviewers had difficulty in evaluating them, since in the 
past there has been limited communication between AIDS 
researchers in the former Soviet Union and elsewhere, due in part 
to deliberate U. S. policy.) 

     Another reason why the published-only abstracts are largely 
ignored is that they are not tied to anything happening at the 
international meeting, while thousands of other abstracts are; 
conference attenders naturally read the latter first, to make 
sure they do not miss an important talk or other event.   
Therefore the scheduled presentations get most of the attention,  
and the total amount of information is so overwhelming that few  
have time get to the published-only papers. 

     This article summarizes some of the published-only abstracts 
in "Track A:  Basic Science," one of the four tracks of the 
conference.  We focus here on leads for new drugs or unfamiliar 
drugs, but could not finish even this category, and will have to 
continue this article in a future issue of AIDS TREATMENT NEWS. 
We also plan to look at the other tracks in future articles - 
especially "Track B:  Clinical Science and Care."  Note that all 
these abstracts were due March 2, 1992, so they do not include 
results after February. 

     Since Track A, which we are covering here, focused on 
laboratory research, the potential drugs mentioned are seldom 
treatments which are ready to use now; rather they are 
possibilities for the future.  Although they do not have 
immediate use, physicians, scientists, and activists may find it 
helpful to know about them. 

     * "Ketotifen Inhibits the Production and Secretion of TNF- 
Alpha in PBMC Cultures of HIV-Infected Patients," Maria Ballmaier 
and others, Medical School Hannover, Germany, abstract # PuA6009. 
This paper found anti-HIV activity of ketotifen (an anti-asthma 
medicine used in Europe) at a concentration which could be 
achieved in patients.  The mechanism of action is by reducing 
levels of TNF (tumor necrosis factor), which is similar to the 
action of the prescription drug pentoxifylline (see AIDS 
TREATMENT NEWS #156, pages 4-5), and possibly NAC. 

     * "Anti-HIV-1 Activity of CD4 Synthetic Oligopeptides," P. 
M. Cereda and others, University of Pavia, Italy, abstract # 
PuA6031.  Two peptides which corresponded to a critical region of 
the CD4 molecule were found to inhibit HIV in laboratory tests. 
The abstract did not say how much inhibition was found.  The 
principle here would be similar to that of soluble CD4, which in 
its original form failed to work as a drug in human tests. 

     * "The Experimental Investigation on Traditional Chinese 
Medicine for Anti-AIDS," Guan ChongFen and others, Institute of 
Basic theory of TCM, Beijing [abstract # PuA6068].  This abstract 
reported two separate studies.  In one, "some Chinese herbs which 
were selected from effective clinical treatment in some African 
countries" were tested for antiviral activity against SIV (simian 
immunodeficiency virus, which causes an AIDS-like disease in some 
monkeys and which is very close to HIV-2) in laboratory tests. 
They did find a "significant" antiviral effect.  The herbs were 
not identified. 

     The other study, in immune-suppressed mice, found that 
different herbs behaved as immunomodulators.  They were 
identified only as "some prescriptions and herbs of effective 
clinical treatment, such as 802, 806, 809, 8911." 

     * "Effects of Immunomodulator SB-73 on Intra-Ocular Graft 
Tooth Germ Development," Sebastiao Hetem and others, School of 
Dentistry of Aracatuba, Brazil [abstract # PuA6072].  SB-73 is a 
potential AIDS treatment being developed in Brazil; a test in 
patients was reported at the international conference in Florence 
in June 1991 [Nunes and others, abstract # WA1238].  This study, 
a toxicity test in animals, found no problem with high doses. 
(Another abstract on effects of SB- 73 on tooth germ development 
was published in the same book, # PuA6159.) 

     * "Group Specific, Neutralizing, Syncytia Inhibiting, 
Cytotoxic Human Monoclonal Antibodies Against HIV-1 for 
Passiveimmunotherapy," Hermann W. D. Katinger and others, 
Institute of Applied Microbiology, Vienna, Austria [abstract # 
PuA6084].  Passive immunotherapy against HIV today is usually 
done by transfusing plasma from persons who are making good 
anti-HIV antibodies and remaining clinically well, to others who 
are not making antibodies effectively and are more seriously ill. 
A refinement of this method is the drug called HIVIG, in which 
the antibodies are extracted and purified from the blood of 
donors.  In both cases, the antibodies were made by people. 

     It is widely agreed that the future of passive immunotherapy 
will depend on antibodies created by special cells engineered 
from human cells in the laboratory, allowing mass production of 
the antibodies and avoiding the need for human donors. Abstract 
PuA 6084 reported the development of 32 different cells which 
secrete anti-HIV antibodies; these were produced by finding cells 
which produced effective antibodies, then transforming those 
cells so that they could grow indefinitely.  Three of the 32 
cells were selected for human testing of the antibodies they 
produce. 

     (Note:  We find it surprising that this abstract was not 
given a poster.  This example illustrates the fact that there is 
no known rational way to select among five thousand abstracts in 
hundreds of different fields.  We believe that this problem will 
only be solved by distributing the submitted abstracts in 
computer form, in such a way that they can be viewed through a 
user-changeable filter based on the evaluations of the referees. 
We suggested such a system and gave some details in AIDS 
TREATMENT NEWS #102, May 4, 1990.) 

     * "Retrogen Increases the Anti-HIV Activity of AZT, ddI, and 
ddC," by Erik De Clercq and others, Rega Institute, Leuven, 
Belgium, and Paul Ki, Retrogen Medical, Inc., Creston, Iowa 
[abstract # PuA6087].  Retrogen is "a double-stranded RNA 
conjugated with polysaccharide"; according to the abstract, it 
has been found to be not toxic to humans and to increase T-helper 
and white blood counts.  In this study, it was tested in 
laboratory cells, using an animal virus (marine sarcoma virus), 
not HIV.  A concentration of retrogen which gave 30 percent 
protection was able to reduce the effective concentration of AZT, 
ddI, and ddC to about a quarter of the concentration otherwise 
required.  Retrogen was also tested against HIV and HIV-2, and 
the effective concentrations were found to be less than two 
micrograms per ml. 

     * "Booby Trapped Cells:  A New Approach for Gene Therapy of 
HIV Infection," D Klatzmann, Hpital de la Piti-Salptrire, Paris 
[PuA6088].  Since the blood cells infected by HIV are all derived 
from stem cells in the bone marrow, it might be possible to 
genetically engineer some of these cells so that they could not 
be infected with HIV, allowing the patient's blood to be 
repopulated with new cells which are immune to the infection; 
this concept is called gene therapy. 

     Most gene therapy approaches so far have tried adding genes 
which in some way make the cell resist infection.  Dr. Klatzmann 
suggests a different approach -- making cells which will quickly 
be killed if they are infected, by adding a gene which makes a 
toxin which will kill the cell, but which does so only under 
control of HIV regulatory sequences.  His group did make such 
cells, and they completely stopped the spread of HIV in 
laboratory cultures.  (This work was described in more detail in 
M. Caruso and D. Klatzmann, Selective Killing of CD4+ Cells 
Harboring a Human Immunodeficiency Virus- Inducible Suicide Gene 
Prevents Viral Spread in an Infected Cell Population, PROCEEDINGS 
OF THE NATIONAL ACADEMY OF SCIENCES, USA, January 1, 1992, volume 
89, pages 182-186.) 

     * "Effect of Natural and Synthetic Lignins on HIV Infection 
and on Myeloperoxidase Activity," Takao Kunisada and others, 
Showa University, Tokyo, Nagoya city University, and Universit t 
Mainz, Germany [PuA6092].  This is a technical study relevant to 
previously-reported work with "a natural lignin from pine cone, 
and synthetic lignins from caffeic acid, ferulic acid, and p- 
coumaric acid," which were described as potent antiviral agents 
in laboratory tests in certain cells. 

     * "Antiviral Action of Polyadenylic-Polyuridylic Acid 
Against HIV in Cell Cultures; Synergistic Effect with AZT," Anne 
Laurent-Crawford and others, Institut Pasteur and Laboratoires 
Beaufour, Paris [PuA6095].  This drug, commonly called 
poly(A)poly(U), has been used in long-term cancer treatment with 
no toxicity observed, according to the abstract.  Poly(A)poly(U) 
showed anti-HIV activity, and also made AZT work more 
effectively, in laboratory tests.  The drug also stimulates 
natural killer cells and other components of the immune system. 
Like AZT, etc., it has no effect on chronically infected cells; 
it seems to work by preventing viral entry, so it would not help 
with cells that are already infected. 

For More Information 

     For those who did not go to the conference and want to look 
further into some of the work mentioned here, the best way is to 
borrow the abstract volumes, or get copies of the abstracts of 
interest, from someone who went to the conference.  Perhaps you 
can locate a set through a local AIDS organization or a 
specialized library.  A few copies may still be available for 
purchase, but they cost $150 for the set -- for fifteen hundred 
pages of technical material reduced in size to tiny, hard-to-read 
type.  (If photocopies are made, it is helpful if they can be 
enlarged, especially if they will then be sent by fax.) 

     This conference, for the first time, asked researchers to 
include their phone and fax numbers at the bottom of each 
abstract, so it is possible to contact them for more information. 
We find that fax works better than calling when there is a large 
time-zone change and/or a language barrier (since it is easier to 
find someone who can read a language than to have a speaker 
available whenever a call might come in). 

***** What Could the White House Do to Fight the Epidemic? 

By Nancy Solomon 

     Michelle Roland, a medical student at the University of 
California in Davis and an AIDS activist, was the only one who 
noticed. 

     While reviewing research proposals for clinical trials for a 
pre-cancerous cervical condition in HIV-positive women, she 
discovered two similar studies under review by two separate 
committees of the AIDS Clinical Trials Group (ACTG) at the 
National Institutes of Health.  Not only are the studies an 
inefficient use of resources in the federal research program on 
AIDS, but the duplication means that each study would compete for 
enrollment, causing both studies to have low participation and 
fail to prove anything, Roland says. 

     She has been raising this issue for almost a year, but has 
not found enough willingness from the different committees of the 
ACTG to coordinate research. 

     "That's a microcosm example of the problem -- but the  
problem is much, much larger," Roland says.  "If there isn't  
sufficient coordination within the ACTG itself, we can't expect  
coordination at any other level...I get calls from clinical  
scientists at the NIH who ask me what the basic scientists are  
doing down the hall." 

     She has tried to force the issue in one area of research, 
Kaposi's sarcoma, and has walked into brick walls.  "I've just 
tried to get Sam Broder of the National Cancer Institute and Tony 
Fauci of the National Institute for Allergy and Infectious 
Diseases to sit down in the same room together and tackle the 
tremendous challenge of planning and coordinating research," she 
says. 

     Roland's criticism is backed by many researchers and leaders 
in the fight against AIDS who say that research is undermined by 
competition, the building of fiefdoms, and lack of coordination 
and an overall strategy.  Furthermore, AIDS prevention strategies 
are ineffective because government health leaders refuse to talk 
directly about sexual transmission of HIV.  And funding for 
direct services and health care continues to be slashed at both a 
federal and local level. 

     Responsibility for this quagmire, they say, lies at the door 
of the White House where first President Reagan and then 
President Bush showed no interest in stopping the AIDS epidemic. 
People with AIDS and those fighting the epidemic agree that the 
Republican administrations over the 11 years of the epidemic have 
failed to properly address AIDS. 

     With the possibility of a change at the White House come 
January, AIDS TREATMENT NEWS recently asked community leaders, 
researchers and activists what exactly they would want from a 
president who cares about AIDS. 

Proposed Infectious Disease Emergency Act of 1993 

     Terry Beswick of the Human Rights Campaign Fund, the largest 
lobbying group representing the needs of gays, lesbians and 
people with AIDS, has written a plan for a White House response 
to the epidemic.  He is calling for an Infectious Disease 
Emergency Act of 1993 that would dismantle the present 
bureaucracy and replace it with a coordinated system.  That  
system would have clear lines of authority and communication from  
the president, and a national management plan that would  
establish a definitive division of labor among all federal  
agencies involved in AIDS work, eliminate duplication and  
inefficiency, and ensure that necessary work is undertaken. 

     His plan, and the suggestions of many others, require that 
AIDS be de-politicized to the extent that efforts to stop the 
spread of HIV, care for the ill, and conduct research be driven 
by principles of public health and science. 

     Beswick is circulating a 19-page draft of the plan for input 
from people with AIDS, activists and community leaders.  So far, 
he has received support.  (He can be reached at the Human Rights 
Campaign Fund, 202/628-4160. 

AIDS Czar 

     "We can't conceive of the power of the president because 
we've never had it," says Paul Boneberg, director of Mobilization 
Against AIDS in San Francisco.  "A new president could get the 
funding, he could double the NIH budget.  It changes to what 
level of a champion do you have versus what level of an 
opponent." 

     Boneberg is among the many who are calling for an "AIDS 
czar" -- a cabinet-level coordinator of the federal response to 
AIDS who would have the ear of the president.  The White House 
must also commit to adequate funding for research and health care 
and to legislative reforms that could change the Centers for 
Disease Control restrictions on HIV education, the immigration 
ban on people with HIV, and procedures of the Food and Drug 
Administration. 

Replacing Political Appointees 

     He also advocates replacing some of the existing AIDS 
bureaucracy.  "Everyone agrees that there are many people there 
principally for their political views, not for their medical 
expertise," Boneberg says. 

     Leading his list are the top three men in the federal health 
administration:  Secretary of Health and Human Services Louis 
Sullivan, his undersecretary and right-hand man, James Mason, and 
the director of the Centers for Disease Control, William Roper. 
All three are Republican political appointees, and Mason and 
Roper have connections to conservative Senator Orin Hatch, R- 
Utah. 

     Mason bared his philosophy on AIDS in the March 1992 issue 
of Medicine & Health, where he was quoted as saying "there are 
certain areas which, when the goals of science collide with moral 
and ethical judgement, science has to take a time out."  Mason's 
spokesman is quoted in the same article as saying "When you're 
fighting a fire, you control it from the outside and let the 
center burn.  The same holds true for medicine." 

     Mason was promoted from his post as head of the Centers of 
Disease Control during the 1980s, when the federal agency failed 
to stop the spread of HIV. 

     A senior AIDS researcher, who spoke with unusual candor 
about the federal research program under the condition of 
anonymity, agrees with Boneberg's assessment. 

     "The White House should appoint a Secretary of Health who is 
knowledgeable in science, not just a guy who has a medical 
degree," he says. 

     "There's no central coordination at the NIH.  God knows 
there's no coordination at the Centers for Disease Control.  We 
don't have a national program," the AIDS researcher says. 

     "If you go out through the states you'll see there's no 
consistency about AIDS prevention.  In North Carolina, students 
get prevention from English teachers.  Most of them can't say the 
word penis without blushing.  To talk about condoms drives them 
nuts.  This ultimately comes back to the CDC and that ultimately 
comes back to James Mason...He's going to make absolutely sure 
that nobody talks dirty during the Bush Administration." 

     The AIDS bureaucracy grew without any overall plan, strategy 
or structure, he says, and its history is marred by opportunism, 
competition and careerism.  "The whole process has been slowed 
down by opportunists." 

Leadership Is Paramount 

     Derek Hodel, who started the PWA Health Group, a New York 
City buyers club, and now works with the AIDS Action Council in 
Washington, says the question of leadership is paramount to 
untangling the mess that has become the government's research 
program on AIDS.  "There is precious little in authority that 
guides research across the institutes," he says.  "A cabinet- 
level post would send a signal that this is a serious issue." 

     He likened the need for coordination, strategy and 
commitment to the way the White House runs the military.  "The 
air force, army and navy all work in collaboration," Hodel says. 
"We need a triple track message:  research, prevention and care." 

     That triple track was also discussed by Dr. Mervyn 
Silverman, president of the American Foundation for AIDS 
Research, who suggested an AIDS czar to coordinate a national 
plan to fight the epidemic.  That person should have the 
expertise necessary to direct the research program as well as a 
public health program willing to use explicit language to prevent 
the further spread of HIV.  "It will come from an administration 
that is compassionate and understanding." 

     In a report released in July, the Treatment Activist Group, 
a splinter group of ACT UP/New York, calls for a doubling of the 
NIH budget, a line-item in the federal budget for AIDS research, 
and the authority of the Office of AIDS Research to reallocate 
funds across institute lines. 

     In a foreword to the report, Larry Kramer sums up TAG's 
conclusions.  "The AIDS plague is utterly and completely devoid 
of leadership," Kramer writes. 

     "At the NIH, no one is at the center, nothing is 
coordinated, no one is asking the life-saving (and money-saving) 
questions:  what is missing from our efforts, what is being 
duplicated, why are we being forced into competition with our own 
fellow institutes right here on our own campus, when budgets are 
shrinking and shrinking?" 

Comment 

     This article attempts to further the necessary debate about 
what we would want from a White House that is not hostile to 
people with AIDS.  We felt that our readership could benefit from 
this kind of discussion rather than a comparison between the 
policies of George Bush versus Bill Clinton.  We hope this 
article will encourage thinking about what we need from 
government.  Asking only for more money will signal that we are 
not doing our jobs:  The federal response to the AIDS epidemic 
must change in many significant ways in addition to an increase 
in funding.  We are more optimistic than at any time since the 
emergence of HIV that a new administration in the White House 
will address AIDS.  The question is, will we be ready to harness 
the power of the presidency to end this epidemic? 

***** Announcements 

** Political Funeral at White House, October 12 

     ACT UP/New York is coordinating a political funeral at or 
near the White House on Columbus Day, Monday, October 12 (the day 
after the October 9-11 display near the White House of The Names 
Project AIDS Memorial Quilt).  This funeral was organized after 
David Robinson, of ACT UP/Golden Gate in San Francisco, decided 
to bring his lover's ashes to the White House on that day. 

     Persons from across the U. S. are invited if they (1) have 
ashes they want to bring, (2) do not have ashes but want to march 
(there will be a procession); or (3) want to send ashes but 
cannot come themselves.  The group also hopes to encourage 
similar actions at other times and places, for example at 
campaign appearances of President Bush. 

     Although this political funeral is separate from The Names 
Project events of the previous days (see below), it has been 
endorsed by Names Project founder Cleve Jones. 

     The procession is tentatively set for 2:00 p. m., although 
arrangements are still being worked out.  For more information, 
persons should call Eric Sawyer at ACT UP/New York, 212/564-AIDS, 
or at home, 212/864-5672, or write to: ACT UP/New York Columbus 
Day Project, 135 W 29th St., New York, NY 10003.  Or call David 
Robinson, 415/252-7401. 

     Note:  This is not a project of Stumpf/Kane (see "Political 
Funerals:  Activist Organization Formed," AIDS TREATMENT NEWS 
#157, August 21, 1992), although the groups are working together. 
Stumpf/Kane has focused so far on the New York area, while the 
October 12 event was initiated from San Francisco and will have a 
national focus. 

** ACT UP White House Demonstration Noon October 12 

     ACT UP/DC is planning a Columbus Day demonstration at the 
White House two hours before the political funeral; the two 
events are separate.  Organizers hope that the earlier 
demonstration, called Hands Around the White House, will have at 
least 4,000 people, enough to link hands around the entire White 
House.  For more information, call ACT UP/DC at 202/328- AIDS, or 
come to the White House on October 12 at noon. 

     Cleve Jones, founder of the Names Project, which is 
organizing the display of the AIDS Memorial Quilt in Washington 
on October 9-11, has endorsed Hands Around the White House and 
plans to attend. 

** The Names Project AIDS Memorial Quilt Washington, D. C., 
   October 9-11, 1992 

     On October 9-11 the Names Project AIDS Memorial Quilt will 
be displayed on the Washington Monument grounds.  This major 
display and the associated events, ceremonies, and conferences 
could draw 300,000 people. 

     Cleve Jones of The NAMES Project noted, "the display is 
several weeks before critical U. S. elections, when the spotlight 
is on the President and members of Congress.  This mobilization 
...will ensure that AIDS is remembered as part and parcel of 
American and international agendas." 

     The Quilt, the size of ten football fields, contains 20,000 
panels -- representing 13 percent of U. S. AIDS deaths and two 
percent of AIDS deaths worldwide.  Panels from 17 NAMES Project 
initiatives from around the world will be included in the 
display. 

     For more information about the October 9-11 events, call The 
Names Project, 415/863-5511. 

** Hurricane Andrew Relief for People with AIDS 

     The PWA Coalition of Dade County, Florida urgently needs 
contributions of money, medications, and nutritional supplements 
to help meet the special needs of people with AIDS, which the 
mainstream disaster relief is not able to handle.  Homes and 
physicians' offices have been destroyed, and many hospitals are 
closed or full. 

     Contributions can be sent to PWA Coalition -- Dade County, 
c/o Berne Teeple, 175 N. E. 36th St., Miami, Florida 33137.  For 
information, phone 305/573-6010. 

** Rifabutin for MAC Prevention:  FDA Hearing September 24 

     The Antiviral Drug Products Advisory Committee (a panel of 
outside experts to advise the U. S. Food and Drug Administration) 
is scheduled to meet September 24, 8 a.m. to 1 p. m.  at the 
Marriott Hotel, 620 Terry Parkway, in Gaithersburg, Maryland. 

     At a previous meeting, the committee did not vote to 
recommend approval, despite two well-controlled trials which 
showed that the drug prevented about 50 percent of the cases of 
MAC in patients with T-helper cells under 200.  Few AIDS 
activists knew about the earlier meeting; some are now concerned 
since this is the only drug proven to prevent MAC. While another 
drug, clarithromycin, has greatly improved the treatment of this 
disease, resistance to it develops in some cases.  Rifabutin is 
currently accessible under an expanded- access program, but 
approval would make it more generally available (and might also 
facilitate research in combination use with clarithromycin and 
other drugs for MAC treatment).  The drug might also be useful in 
treatment of tuberculosis. 

     For more information about AIDS community concerns with this 
drug, call Lynda Dee, 410/332-1170. 

** In Memoriam:  Ron Woodroof 

     Ron Woodroof, founder of the Dallas Buyers' Club, died on 
August 15, 1992.  He had been diagnosed as HIV-positive, with a 
T-helper count of nine, in 1986; physicians gave him six weeks to 
live. 

     In 1987 Woodroof was a leader in a class-action suit to 
obtain AZT for persons with AIDS who were treated at Parkland 
Hospital in Dallas.  Later he became knows as the "cowboy 
smuggler," opening the Dallas Buyers' Club in 1988; the 
organization eventually assisted 3,000 persons with AIDS or HIV 
to obtain non-approved drugs such as peptide T.  His group was 
perhaps the most radical of the buyers' clubs.  Jim Campbell, a 
former executive director, has started a new buyers' club, DBC 
Alternatives, also in Dallas, to continue Woodroof's work. 

     A memorial service is planned for September 12 at 5:00 p. 
m., at the AIDS Memorial Tree in Lee Park, in Dallas. 

***** 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, Business, and Marketing: 
   David Keith 
   Thom Fontaine 
   Jason Heyman 
   Nancy Solomon 
   Laura Thomas 
   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 1992 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. 

&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&& 

Newsgroups: sci.med.aids