From: Billi Goldberg <bigoldberg@igc.apc.org>
Subject: ATN #167
Note: Copyright 1992, Dan R. Greening. Non-commercial reproduction allowed.
Archive-Number: 14
Organization: unspecified
Date: Fri, 22 Jan 93 22:09:02 PST

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

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Copyright 1993 by John S. James; permission granted for non-commercial 
use. 

AIDS TREATMENT NEWS Issue #167, January 15, 1993
   phone 800/TREAT-1-2, or 415/255-0588 

CONTENTS:  

Announcements:

   Oral Ganciclovir Prophylaxis Study Recruiting

   New York:  Hypericin Trial Recruiting, P24 No Longer
      Necessary

   San Francisco, Salt Lake City:  Acyclovir-Resistant Herpes
      Simplex Trial

   Tat Inhibitor Support Group Forming -- Baltimore, Boston,
      Cleveland, San Diego

   San Francisco:  Conference on Speech, Hearing, and Vision
      Loss, February 26

   San Francisco:  "Caring for HIV Naturally" Four-Part Forum

   AIDS Czar Issue:  Report to President, or Report to HHS? 

 Resource List, January 1993:  Activist Groups, Buyers' Clubs,
   and PWA Coalitions 

 ***** ddI vs. AZT:  New Results, No Press 
by Larry Tate 

     For months, AIDS researchers have eagerly awaited the results of a 
major clinical trial ACTG 116A, comparing AZT with two different doses 
of ddI in volunteers with little or no previous antiviral treatment.  
Results were released on December 30 by the National Institute of 
Allergies and Infectious Diseases (NIAID). This study had been expected 
to tell which of these FDA-approved drugs was better for "first- line" 
therapy -- the drug given to people to begin treatment and continued, 
traditionally, until it becomes less effective.  But the study  gave a 
complex answer to this question -- or perhaps answered a different 
question. 

     There has been little or no press coverage of the NIAID 
announcement.  But ACTG 116A found major differences in survival and in 
disease progression depending on how the antivirals were used; as a 
result, this trial will influence thinking among patients, physicians 
and researchers for some time. For this reason, and because it is 
difficult for the public to get much  information about the trial at 
this time, AIDS TREATMENT NEWS decided to cover the results in some 
detail. 

     According to a NIAID statement, "the primary finding of the study 
was that the relative efficacy of ddI and AZT depends upon the duration 
of prior AZT therapy.  Generally, AZT appeared to be more efficacious 
than ddI among patients who were AZT-naive at study entry, while ddI 
appeared more efficacious than AZT among those who were AZT-experienced, 
particularly those who had 8-16 weeks of prior AZT.  This phenomenon was 
observed both for the primary endpoint of time to new AIDS-defining 
event or death, and the secondary endpoint of survival."  The group with 
the best results of any in the study was the one that started ddI after 
8-16 weeks of AZT use. 

     ACTG 116A clarifies and extends last year's results from ACTG 
116B/117, which compared the same ddI doses to AZT in people with prior 
AZT use of at least 16 weeks (with a median duration of about one year).  
That study showed a clear advantage for ddI in delaying disease 
progression, and the current FDA labeling of ddI reflects that finding, 
recommending ddI after "prolonged" AZT  use.  However, the earlier study 
did not show a clear survival advantage for ddI. 

The Trial 

     ACTG 116A began in 1989 and ended in May 1992; volunteers wereeks.  
The trial was conducted at 38 sites, mostly centers of the AIDS Clinical 
Trial Group (ACTG).  It included 617 people who either (1) had AIDS or 
advanced ARC and fewer than 300 T-helper cells, or (2) had  asymptomatic 
HIV infection and fewer than 200 T- helper cells. 
[Note:  the term ARC -- AIDS-related complex -- is now obsolete; ACTG 
116A was designed several years ago.] 

     The volunteers were randomly assigned into three arms:  ddI 500 mg 
per day, ddI 750 mg per day, or the standard dose of AZT. (The ddI was 
given in powder form; 500 mg of the powder equals 400 mg of the better- 
absorbed tablets, which are now most often used.  The ddI doses "were 
reduced by one third for patients weighing less than 60 kg [132 
pounds].") 

     Disease "progression" was defined, as in the earlier study, as 
either the occurrence of a new AIDS-defining event or death. 

     Among 380 people without prior AZT, 29 percent  of those on 500 
mg/day of ddI progressed to more serious illness or death; 31 percent 
progressed at 750 mg/day ddI; but only 18 percent of the AZT arm 
progressed, a statistically significant advantage for AZT.  
["Statistically significant" means that this big a difference in results 
would be unlikely to occur by chance alone, if there were really no 
difference in how well the drugs worked.] 

     Among the 119 people with some prior AZT use but no more than eight 
weeks, there was a small trend in favor of AZT, but it was not 
statistically significant. 

     However, among 118 people with 8-16 weeks of prior AZT use, one 
year progression rates were 11 percent for 500 mg of AZT, 17 percent for 
750 mg, but 33 percent with AZT -- a statistically significant advantage 
for ddI. 

     In contrast to the results of the related study reported last year 
(ACTG 116B/117), the new survival statistics from ACTG 116A generally 
reflected progression statistics.  For people with no prior AZT, AZT 
showed a clear advantage in survival; one-year death rates were 10 
percent for 500 mg of ddI and nine percent for 750 mg, but only four 
percent for AZT.  For people with up to eight weeks of prior AZT, there 
was no significant difference in survival rates.  But for people with 
eight to 16 weeks of prior AZT, ddI showed a clear survival advantage 
(one-year death rates three percent for 500 mg of ddI, and two percent 
for 750 mg, compared to 11 percent for AZT).  [The small differences in 
survival rates between the two ddI doses are not statistically  
significant, and could easily have occurred by chance.] 

     The primary side effect of AZT was granulocytopenia (low white cell 
counts).  Primary ddI side effects were pancreatitis and peripheral 
neuropathy. Two volunteers in the study died of pancreatitis; both were 
on the 750 mg ddI dose. The rate of pancreatitis at the lower ddI dose 
was seven percent, compared to four percent among the volunteers 
originally assigned to AZT, a  difference which was not statistically 
significant.  This finding agrees with that of 116B/117, and should 
reduce the long-standing fear (based on reports from the early ddI 
expanded-access program) that pancreatitis is a likely result of ddI 
use. 

Analysis 

     The results of this study are surprising, and not easy to 
interpret.  They will be much discussed and analyzed in the months to 
come.  When ACTG 116A started, it was expected that people with no prior 
AZT and people with 16 weeks of prior AZT would turn out to respond 
about the same.  The decisiveness of  relatively small differences in 
prior AZT duration was not foreseen. 

     It seems puzzling that people starting therapy on the standard ddI 
dose will experience a 29 percent one-year progression rate, while 
giving people 8 weeks of AZT before starting them on the same ddI dose 
will reduce that to 11  percent.  The study seems to show that this 
short course of AZT before switching contributes dramatically to the 
subsequent efficacy of ddI and to the over-all efficacy of therapy (the 
lowest progression rate on a single drug was 18 percent, in people who 
received only AZT), but it doesn't show why.  There  are speculations 
about intracellular mechanisms, but there is as yet no agreement on what 
they might be. 

     For people with longer-term AZT use (as in the study reported last 
year, 116B/117) it might be reasonable to suppose that AZT resistance 
contributes to the added efficacy of switching to ddI; however, in the 
short-term use allowed in 116A, it is unlikely that resistance is a 
significant factor. 

     Perhaps 116A does not really show what it seems to show. According 
to a NIAID summary, "The trial was not designed to test the hypothesis 
that switching to ddI after at least 8 weeks of AZT is an appropriate 
monotherapy strategy for AZT- naive patients with advanced HIV 
infection.  Although the data are consistent with this hypothesis, there 
are other possible explanations for the treatment differences observed 
in the group with 8-16 weeks of prior AZT.  A particular concern is that 
this group may not be representative of all patients with 8-16 weeks of 
prior AZT because many patients who felt they were benefiting from AZT 
may have elected not to enter ACTG 116A.  "But it is  thought unlikely 
that this concern would account for the important differences that were 
seen. 

     There are other uncertainties which might have affected the results 
of the study.  (1) A number of volunteers dropped out of the trial, 
possibly biasing it in some way.  (2) There was a 20 percent crossover 
rate, which refers to people who started on one drug but then switched 
to the other after problems arose.  [Under the "intent to treat" 
analysis used for this trial, they were  counted in the final analysis 
as if they had stayed on the first drug, even though they actually 
switched.  The reason for this seemingly bizarre procedure is that 
researchers often want to measure the effect of the decision to treat 
with one drug or the other (which may differ from the treatment that 
actually is delivered) -- since only the decision is directly under the 
physician's and patient's control.]  (3) For a few months at the 
beginning of the study the AZT group was receiving the old dose of 1200 
mg per day, which could have affected the side-effect rate for that 
group -- a rate that was higher than the ddI rate and could have caused 
more people to switch to ddI than to AZT. (4) The differences in 
survival rates, NIAID cautions, may be affected by the lack of long-term 
follow-up for more people in the AZT group than in the ddI groups, since 
some deaths could have been missed.  (5) The people in the AZT-naive 
group tended to start with lower T-helper counts than the people in the 
AZT- experienced groups, but AZT-experienced people more often had an 
AIDS diagnosis -- two potential biases, but fortunately in the opposite 
direction.  (6) The study was originally intended to be larger, but 
recruiting problems caused the 500 mg ddI arm to be closed prematurely, 
so that comparisons between that arm and the other two have, according 
to NIAID, "slightly reduced statistical  power."  It may not be possible 
to say if or how these and other factors affected the study's outcome. 

     On balance, however, the study results are more likely to be 
accepted as further confirmation of the broader trend in findings on HIV 
antiretrovirals, i.e., that no single drug, given for an indefinite 
period, is likely to be the most effective treatment strategy.  The 
NIAID summary notes, "If a patient does switch from AZT to ddI, it is 
not known whether returning to AZT or remaining on ddI is more 
appropriate. Future trials will be required to assess the value of 
alternating regimens." 

     There have already been various small studies looking at 
alternating regimens, and the results suggest that future treatment 
strategies are likely to center not on alternating antiretrovirals but 
on combining them.  A small study presented at last year's International 
AIDS Conference (and soon to be  published) directly compared a group of 
volunteers alternating AZT and ddI to a group combining them, and found 
decisive superiority for the combination group. A researcher involved in 
ACTG 116A says that, by showing the added value of using more than one 
drug, this study (116A) could be interpreted as providing further 
support for the idea of combination therapy. And a press statement from 
Burroughs- Wellcome (maker of AZT) notes, "The data from 116A must be 
placed in the perspective of the emerging consensus that combination 
therapy will play an increasingly critical role in the management of HIV 
disease." [As noted in the last issue of AIDS TREATMENT NEWS, new 
information on various combination therapies will become known 
throughout this year and next year.] 

     Still, official recommendations favoring combination therapy will 
probably not come soon; and NIAID pointedly made no recommendations, on 
the basis of 116A, about switching from one drug to another after 8 
weeks.  The clinician and patient, looking at the findings of 116A, may 
not know what guidance, if  any, can be taken from it. 

     In the near future there may be a meeting of treatment experts to 
arrive at an interpretation of this study's findings. In case a 
consensus is reached that switching drugs after relatively short periods 
of first-line therapy is the best treatment strategy, every HIV doctor 
and most HIV patients would be directly affected.  Not only clinical 
practice but some ongoing clinical trials would need to be rethought.  
Dr. Laurie Smaldone (a member of the study team) says, "This is a very 
important study and everyone recognizes it." 

     A spokesperson for Bristol-Myers (maker of ddI) says that, although 
timetables and details are undecided, the company will seek expanded FDA 
labeling for ddI based on 116A.  The current labeling indicates 
switching to ddI after "prolonged" AZT use; 8 weeks is far from a 
"prolonged" period. 

     In sum, a study that had been expected to tell which drug, AZT or 
ddI, is the better single-drug therapy may, instead, be providing 
further evidence that treatment with either single drug -- particularly 
when continued indefinitely without switching drugs -- is probably an 
idea whose time is passing. 

***** CMV Experimental Treatment Overview (Part I)

by Giacomo egalovirus (CMV) is a virus which infects much of the general 
population, and most persons with HIV.  CMV rarely causes disease, 
however, unless the immune system is suppressed -- as in recipients of 
organ transplants who must take immunosuppressive drugs, or in persons 
with AIDS.  Those with T-helper counts under 50 are at greatest risk of 
CMV disease, although it can occur at higher T-helper counts. 

     CMV retinitis, an infection of the retina of the eye which causes 
blindness if untreated, occurs in 10 to 20 percent of people with AIDS 
in the United States.  CMV retinitis accounts for about 80 percent or 
more of CMV disease in persons with AIDS. One eye is usually affected 
first, and a two or three week intensive "induction" treatment with an 
anti-CMV drug (ganciclovir or foscarnet, see below) is necessary to save 
its sight.  After the induction phase, patients are put on a lower 
"maintenance" dose of one of the drugs, to prevent the retinitis from 
continuing to progress.  If the person does not use the maintenance 
therapy, the retinitis will also affect the other eye within six months 
in roughly 60 percent of the cases; with maintenance therapy, this is 
reduced to about 15 percent. 

     CMV can also cause disease in the lungs, colon, adrenals, 
esophagus, and other organs. 

     Because CMV retinitis can rapidly cause permanent vision loss, 
persons with T-helper counts less than 200 should have regular eye 
examinations, and must get medical attention immediately if vision 
problems develop.  (Although retinitis rarely occurs when T-helper 
counts are above 50, there are other  reasons for persons with AIDS to 
have eye examinations; also, if retinitis occurs, it is important to 
have already established a relationship with a CMV-knowledgeable 
ophthalmologist.)  While exposure to CMV can be detected by a test for 
antibodies in the blood, this test does not tell whether or when CMV 
disease will occur. 

     Two drugs -- ganciclovir and foscarnet -- have been approved by the 
FDA for treating CMV retinitis by intravenous administration.  While 
known to be effective, both have serious drawbacks, and a number of 
experimental treatments in various stages of development are being 
tried.  This article will look at  new ways to use the standard 
treatments, as well as experimental CMV treatments which are now being 
developed. 

Ganciclovir; Use of G-CSF or GM-CSF 

     Ganciclovir (brand name Cytovene; formerly called DHPG) has been 
approved for CMV retinitis since 1990 (it is still being tested for CMV 
colitis).  When retinitis is first diagnosed, the patient receives twice 
daily infusions of ganciclovir for two to three weeks (induction 
therapy), and is then put on lower daily doses for maintenance.  Without 
the maintenance therapy, the  retinitis may recur within a short period 
of time.  (An easier dosage schedule of three infusions every week for 
maintenance therapy is currently being tested.) 

     Because ganciclovir is toxic to neutrophils (a class of infection-
fighting white blood cells), blood tests must be carefully monitored. 
Ganciclovir-induced neutropenia (lack of enough neutrophils) can be life 
threatening; fortunately it is usually reversible within a few days of 
stopping therapy. 

     Since continuing CMV treatment is necessary, the best approach may 
be to avoid or neutropenia by using either G-CSF (Neupogen) or GM-CSF 
(Leukine).  Both of these are substances produced by the body which 
stimulate the growth of neutrophils.  In one study presented at the 
Eighth International  Conference on AIDS in Amsterdam, patients were 
randomized into a group which received ganciclovir alone, and another 
group which received ganciclovir plus GM-CSF. Eighteen percent of the 
patients receiving the combination developed neutropenia, compared to 45 
percent of the patients receiving ganciclovir alone (abstract #MoA 
0005). 

     Both G-CSF and GM-CSF are FDA-approved for treating low neutrophil 
counts in other situations, but they are still being tested for 
combination therapy with ganciclovir, so there is no official approval 
yet, even though the drugs are in widespread use for this purpose and it 
is clear that they can be effective. For now, these drugs must be 
prescribed off label (meaning that  while the FDA has approved the drug, 
it has not specifically approved that particular use). Unfortunately, 
there are still many physicians who will not prescribe these drugs off 
label, even in severe cases of neutropenia. Insurance reimbursement can 
also be a problem. 

 Ganciclovir Eye Implants 

     Another approach to limiting the toxicity of ganciclovir is a new 
drug delivery system now being tested at the New England Eye Center of 
the New England Medical Center, and at the University of Texas 
Southwestern Medical Center in Dallas.  In these trials, a tiny time-
release capsule containing ganciclovir is surgically implanted into the 
eye.  Two eye- implant systems are being investigated.  One slowly seeps 
ganciclovir into the eye for 120 days, and the other system seeps 
ganciclovir for 240 days.  According to Jay Duker, M. D., Director of 
Vitreoretinal Service of the New England Eye Center, "the success rate 
with both the 4-month implant and 8-month implant is running about 90 to 
93%.  What that means is that in the patients who immediately respond to 
treatment, we have not had anyone reactivate with CMV retinitis as long 
as there's medication left in the implant.  We have had a certain 
percentage, maybe ten percent, who have not responded at all to the 
implant.  So there are some patients who will not respond, but in the 
ones that do seem to respond very well."  One of the reasons for the 
success of this drug delivery system is that it allows for a constant 
rate of release of ganciclovir into the eye, while the amount of 
intravenous ganciclovir peaks after slightly more than an hour, but then 
leaves the eye without high levels until the next dose. 

     Phase III trials of this drug-delivery system will begin in the 
first few months of 1993 at the New England Eye Center, and at nine 
other sites across the country.  There will probably be three protocols 
in these phase III trials. One will be for newly diagnosed individuals 
with CMV retinitis and will compare the 4- month implant, the 8-month 
implant, and intravenous ganciclovir. The second protocol will be for 
individuals failing intravenous therapy (foscarnet or ganciclovir) and 
will compare the options of continuing on intravenous drug alone, or 
continuing intravenous therapy with an implant.  A third trial would be 
for compassionate use of the drug delivery system. 

     Kevin Frost, a treatment activist with ACT UP/New York and TAG 
(Treatment Action Group) who has worked on the development of these 
protocols for almost a year, said that he "firmly believes we will have 
a compassionate use protocol." One problem with a drug delivery system 
that must be surgically implanted is that a surgeon trained in the 
technique must do the procedure, so the  compassionate use protocol will 
probably be limited to the 10 sites across the U. S. where the phase III 
trial will take place. Another problem is insurance or Medicaid 
reimbursement for the cost of the surgery.  According to Kevin Frost, 
"when you start talking about this in terms of cost effectiveness and 
Medicaid looks at it in terms of cost-effectiveness, there's absolutely 
no question that it's cheaper to use the drug delivery system [compared 
to the alternative of daily intravenous infusions].  As a matter of 
fact, the Medicaid agencies in New York and Texas have already agreed to 
pay for the procedure.  My hope is that the national Medicaid program 
will agree to pay for it within the next couple of months -- we will be 
going to work on this very issue when the protocol is approved by the 
FDA.  "The phase III trial will probably take 6 to 9 months to enroll 
patients and, because the implant lasts 8 months, it will take another 8 
months before the trial closes. Then the data will have to be presented 
to the FDA for drug approval. Hopefully, the company that produces this 
device will make it available by compassionate use to those individuals 
who have CMV retinitis that is progressing, but do not meet the 
eligibility criteria of the trial. 

     The main risks with the eye implant are those associated with 
surgery: hemorrhaging and infection.  The incision line is small and not 
visible without a close inspection of the eye. There is also a danger of 
retinal detachment, but cases of detachment in the study appear to be 
due to the disease process  and not the drug-delivery system.  Another 
risk in administering ganciclovir this way is that CMV infection is 
often systemic (in other organs in the body, not only in the eye), and 
other parts of the body would not benefit from the eye implants. 

     It is also possible to inject ganciclovir directly into the eye, 
although this method does not maintain a constant high level within the 
eye like the implants described above. 
Oral Ganciclovir 

     An oral version of ganciclovir, which would be much more convenient 
than the intravenous drug and less expensive to administer, is currently 
being investigated as a treatment for CMV retinitis at 22 sites across 
the U. S. Oral ganciclovir has a bioavailability of six to ten percent 
(meaning that only that fraction is absorbed when the drug is taken 
orally).  In this trial patients are randomized to either 1000 mg three 
times a day or 500 mg six times a day of oral ganciclovir.  The efficacy 
of these regimens is being compared to that of a third arm in which the 
patients receive IV ganciclovir at a dose of 5 mg/kilogram of body 
weight every day. 

     Clinical trials of oral ganciclovir as a CMV prophylaxis for HIV-
infected individuals with low T-helper cell counts are now beginning 
(see notice in "Announcements" section, below). According to Jay 
Lalezari, M. D., co-director of HIV research at Mt. Zion Hospital in San 
Francisco, "CMV is the last major  opportunistic infection for which we 
have no prophylaxis, so one is urgently needed.  Our studies of oral 
ganciclovir have shown it to be relatively safe and well tolerated, and 
to have demonstrated activity in reducing titers of CMV infection in 
people."

     Note:  The second and final part of this article will cover 
foscarnet, combination ganciclovir/foscarnet therapy, IVIG, CMVIg, 
MS-109, HPMPC, BW 256, etoposide, and hypericin.

 ***** Announcements 

** Oral Ganciclovir CMV Prophylaxis Study Recruiting

     A major national study is testing an oral form of the anti- CMV 
drug ganciclovir to see if it can prevent CMV disease in patients who do 
not have it already.  This trial is for persons with AIDS and with T-
helper counts under 100 -- or persons without AIDS and T-helper counts 
under 50. There are various other entry criteria.  This study is 
sponsored by Syntex Inc. of Palo Alto, California. 

     Trial sites are in Atlanta, Berkeley (CA), Boston, Chicago, Dallas, 
Honolulu, Houston, Los Angeles (2 sites), New York (3 sites), 
Philadelphia, Pittsburgh, San Diego, San Francisco (3 sites), and 
Washington, D. C. 

     For more information about this trial, or to find the phone number 
of a site in one of the above cities, call the AIDS Clinical Trials 
Information Service, 800/TRIALS-A, or see the new edition of the 
AIDS/HIV Treatment Directory (published by AmFAR, the American 
Foundation for AIDS Research), which is expected to be distributed near 
the end of January.  As we go to press, this trial is not yet in the 
TRIALS-A database, but that office can give contact phone numbers for 
the sites from a draft copy of the AmFAR directory.

     Note:  Do not confuse this prophylaxis trial with a separate trial 
of oral ganciclovirf vs. IV ganciclovir for maintenance  therapy for 
persons who have already developed CMV disease. This trial, at 22 sites 
throughout the U. S., is about half enrolled, and is recruiting 
volunteers.  For more information about it, call 800/TRIALS-A. 

 ** New York:  Hypericin Trial Recruiting, P24 No Longer Needed 

     The ongoing trial of the antiviral hypericin at New York University 
has been changed to compare oral vs. intravenous doses of the drug; 
previously it only tested intravenous administration.  Volunteers no 
longer need to be p24 positive --  an inclusion criterion which had been 
a problem in New York, since the p24 antigen test is not approved for 
medical practice under New York's rules, and therefore many patients in 
that state do not know whether they are p24 positive or not. 

     For more information about this trial, call New York University at 
212/263-6565.  Or call the AIDS Clinical Trials Information Service, 
800/TRIALS-A.

     Note:  Hypericin remains an important experimental treatment; in 
laboratory tests, it has activity against HIV, CMV, and certain other 
viruses. Results of the current trial have suggested that it may need to 
be administered at least daily, probably in oral form, to maintain 
antiviral blood levels, since intravenous administration causes high 
peak concentrations which may cause dose-limiting side effects, while 
leaving blood levels too low for antiviral activity at other times.  The 
current trial, using low doses to determine how well the drug is 
absorbed when given orally, will provide data needed to design a later 
trial to test whether oral dosing can be effective. 

 ** San Francisco, Salt Lake City:  Acyclovir-Resistant Herpes

   Treatment Trial 

     Persons with AIDS and one or more lesions of acyclovir- resistant 
herpes may be eligible for a trial of SP-303T, a drug being developed by 
Shaman Pharmaceuticals, Inc., in San Carlos, California, a company which 
develops drugs from rainforest plants.  SP-303T is derived from a plant 
long used for treating herpes in South America; it has been found to be 
active against acyclovir-resistant herpes in laboratory tests.  The drug 
is applied topically; the first volunteers were treated in January 1993. 

     For more information about this study, call Julie Calo at San 
Francisco General Hospital, 415/476-9296 ext. 84607; or call Carol 
Bujwit at the University of Utah School of Medicine, 801/581-4878. 

 ** Tat Inhibitor Support Group Forming -- Baltimore, Boston,
   Cleveland, San Diego 

     A support group for persons in the current tat inhibitor trial (now 
taking place in the four cities above) is being formed.  Persons in this 
trial can call Giacomo Palazzolo in Boston at 617/524-7780, between 9:00 
a.m. and 5:00 p.m. Eastern time.  Please note that this is Giacomo's 
home phone and not a  hotline or general information number.  He cannot 
handle a great many calls, but wants to provide a communication forum 
for persons who are taking the drug.

     The current tat trial is now fully enrolled, and not open to new 
patients. 

 ** San Francisco:  Conference on Speech, Hearing, and Vision
   Loss, February 26 

     "HIV-Related Speech, Hearing, and Vision Loss:  A Conference for 
Health Care Providers, Caregivers, and People with HIV," will be held 
February 26 from 8:30 a.m. to 3:30 p.m. at the University of California, 
Laurel Heights Auditorium, 3333 California Street, San Francisco.  
Persons are asked to register by February 12. Fees (including lunch) are 
$40 physician, $25 other  professionals, $15 persons with HIV and all 
others, but no one will be turned away for lack of funds. This 
conference is sponsored by several AIDS, vision, and hearing 
organizations. 

     For more information, call Kathy Abrahamson at 415/431-1481. 

** San Francisco:  "Caring for HIV Naturally" Forum 

     The Traditional, Holistic, and Alternative Treatment Committee of 
ACT UP/San Francisco is sponsoring a four-part forum on alternative 
treatments, on four Saturdays between January 30 and March 13.

     The first session, "Nutrition and Exercise," includes four 
speakers: holistic physician Jon Kaiser, M.D., on diet and food 
supplements; Parris Kidd, Ph.D., author of Living with the AIDS Virus -- 
A Strategy for Long-Term Survival, on anti- oxidants and the treatment 
of HIV; David Merriweather, assistant to Jonathan Wright, M.D. (who 
received widespread publicity after an FDA raid on Dr. Wright's clinic 
in Kent, Washington) on issues of digestion and assimilation; and Tom 
Riccobuono, on exercise for people with HIV.  This session will take 
place Saturday, January 30, 1 p.m. to 5 p.m., in the Davies Medical 
Center, Castro Street and Duboce Avenue, in the Gazebo room. 

     Later sessions are:  Body-Mind-Spirituality, Feb. 13; Cross- 
Cultural Therapies, February 27; and Long-Term Survivors, March 13. 

     For more information, or to check locations of later sessions, call 
ACT UP/San Francisco's information hotline at 415/621-0291.

 ** AIDS Czar Issue:  Report to President or Report to HHS? 

     ACT UP/New York has begun a letter writing campaign after hearing 
reports that the Donna Shalala, the new Secretary of Health and Human 
Services (HHS) wants the new "AIDS czar" promised by Clinton to report 
to her, instead of directly to the President.  ACT UP believes that the 
decision may be made soon. No "AIDS czar" has been appointed yet. 

     There has been widespread consensus that such a position sould 
report directly to the President -- one reason being that AIDS issues 
involve many departments, not only HHS.  "The rationale for the position 
requires the immediate attention and direct access to the President, 
with special powers to  coordinate, across all governmental agencies and 
branches, the federal government's response to AIDS.  It also requires 
the full commitment of the President to use his office as a from ACT 
UP/New York letter to President-Elect Clinton). 

     As this issue went to press, United for AIDS Action also joined the 
effort to have an AIDS coordinator in the White House. 

     For more information on this issue and on how you can help, call 
ACT UP/New York, 212/564-AIDS, or Eric Sawyer, 212/864- 5672.

***** Resource List, January 1993:  ACT UP Affiliates, Buyers'
      Clubs, and PWA Coalitions 

Updated by Tadd Tobias 

     The following is a directory of AIDS activist groups, buyers' c 
coalitions.  It includes local and regional contacts for individuals who 
want to get involved with AIDS activism or for those seeking 
experimental treatments or community support services.  We have only 
listed phone numbers  which we could verify; some of these are home 
telephones, not offices. 

     For information about new ACT UP affiliates, contact the ACT UP 
Network, 414/483-0376.  For information about new PWA coalitions, 
contact the National Association of People Living With AIDS (NAPWA), 
202/898-0414.  If you know of organizations which you think should be 
included in our next directory, please  contact this writer at 
415/255-0836. 

  The classifications are: "A" -- local activist and direct action 
groups; "B" -- buyers' clubs for alternative or experimental treatments; 
"C" -- coalitions and community networks organized by and for people 
living with AIDS.

 ALABAMA
   Birmingham   Birmingham AIDS Outreach 205/322-4197C
     AIDS Action Coalition   205/533-2437   C 
 ARIZONA
   Phoenix   ACT UP/Phoenix   602/433-4966   A
   Phoenix   Phoenix Body Positive   602/264-7414   C
   Tucson  La Frontera Center/Positively Native 602/770-7418  C
   Tucson   PWA Coalition Tucson    602/770-1710 BC 
 ARKANSAS
   Little Rock   Arkansas AIDS Brigade   501/372-7473   A 
 CALIFORNIA
   Fresno   ACT UP/Fresno   209/843-2748   A
   Lompoc   ACT  805/736-5136   A
   Long Beach   Being Alive Long Beach   310/495-3422   C
   Los Angeles   ACT UP/Los Angeles   213/669-7301   A
   Los Angeles   Being Alive   310/667-3262   C
   Oakland   ACT UP/East Bay   510/836-4401   A
   Orange Cty   ACT UP/Orange County   714/253-0185   A
   Palm Desert   Alternative Supplem. Club   619/568-1725   B
   Redondo Beach  Being Alive South Bay   310/544-2702   C
   San Diego   ACT UP/San Diego   619/280-2961   A
   San Diego   Being Alive San Diego   619/291-1400   C
   San Francisco   Healing Alternatives   415/626-2316   B
   San Francisco   ACT UP/Golden Gate   415/252-9200   A
   San Francisco   ACT UP/San Francisco   415/621-0291   A
   San Mateo   San Mateo Cty AIDS Pgm   415/573-2385   C
   Santa Barbara   ACT UP/Santa Barbara   805/569-3299   A
   Van Nuys   Being Alive   818/908-3840   C
   Ventura   ACT UP/Ventura   805/653-5706   A
   West Hollywood  Being Alive   310/854-1327   C 
 COLORADO 
   Denver   ACT UP/Mile High   303/643-1895   A
   Denver   PWA Coalition Colora 303/837-8214 BC 
 CONNECTICUT
   Bethel   AIDS Project Greater Danbury   203/778-2437   C  d   ACT  
 UP/Connecticut   203/224-7428   A
   New Haven   ACT UP/New Haven   203/732-2229   A 
 DISTRICT OF COLUMBIA
      ACT UP/DC   202/328-2437   A
      Carl Vogel Center   202/289-4898   B
      DC Buyers' Club (DCBC)   202/232-5494   B
      Lifelink   202/789-4090   C
      The Positive Woman   202/529-5447   C 
 FLORIDA
   Clearwater   AIDS Coalition Pinellas   813/449-2437   C
   Dade County   PWA Coalit 305/573-6010   C
   Ft. Lauderdale   Health Link   800/447-9242   B
   Gainseville   ACT UP/Gainseville   904/495-3525   A
   Jacksonville   PWA Coalition   904/398-9292   C
   Miami   ACT UP/Miami   305/787-1131   A
   Miami   Body Positive   305/576-1111   C
   Miami   Cure AIDS Now   305/375-0400   C
   Orlando   Trans-AIDS Support Serv. 407/352-2352ABC
   Palm Beach   PWA Coalition   407/697-8033   C
   Pompano Beach PWA Coalition Broward County  305/565-9119 C
   Sarasota   AIDS Manasota   813/954-6011   C
   Tampa   ACT UP/Tampa Bay   813/882-5359   A
   Tampa   DACCO   813/223-4648   C
   Tampa   PWA Coalition TampaBay 813/238-2887   C
   West Palm B. ACT UP/West Palm Beach 407/433-9222   A 
 GEORGIA
   Albany   Give For Life Association   912/883-1290   C
   Atlanta  T UP/Atlanta   404/874-6782   A
   Atlanta   NAPWA Atlanta   404/874-7926   C
   Atlanta   Atlanta Buyers' Club   404/874-4845   B 
 HAWAII
   Honolulu   ACT UP/Hawaii   808/524-7438   A
   Honolulu   PWA Coalition   808/948-4792   C 
 ILLINOIS
   Chicago   ACT UP/Chicago   312/509-6802   A
   Chicago   Chicago Wect   312/271-2070   C
   Chicago   Options for AIDS Treatments   312/509-5127   B
   Chicago   Test Positive Aware Network   312/404-8726   C 
 INDIANA
   Indianapolis   ACT UP/Indianapolis   317/635-2712   A
   WA Coalition   317/636-2134   C
   Indianapolis   Indiana Cares   317/630-9075   C 
 IOWA
   Davenport   Quad Cities AIDS Coalit.  319/324-8638   C 
 KANSAS   Kansas City   ACT UP/Kansas City   816/753-5930   A
   Topek Positive Action Coalition   913/223-7769   C 
 LOUISIANA
   Baton Rouge   ACT UP/Capitol   504/343-3375   A
   New Orleans   PWA Coalition   504/944-3663   C
   New Orleans   ACT UP/New Orleans   504/522-5105   A
   Shreveport   ACT UP/Shreveport   318/865-5217   A 
 MAINE
   Portland   ACT UP/Portland Maine   207/828-0566   A
   Portland   PWA Coalition   207/773-8500   C 
 MARYLAND
   Baltimore   ACT UP/Baltimore   410/837-5203   A
   Baltimore   AID Baltimore   410/837-2437AB
   Baltimore   PWA Coalition   410/625-1677   C 
 MASSACHUSETTS
   Boston   ACT UP/Boston   617/492-2887   A
   Bostonon Living Center   617/236-1012   C
   Boston   Committee of Ten Thousand   617/344-9634   C
   Boston   Multi-Cultural AIDS Coalition   617/442-1622   C
   Boston   PWA Coalition Boston   617/266-6422BC
   Boston   Positive Directions   617/262-3456   C
   Hyannis   Cape Cod AIDS Council   508/778-5111   C
   North Hampton   ACT UP/Western Mass   413/584-4213   A
   Provincetown   ACT UP/Provincetown   508/487-3049   A
   Provincetown   Provincetown Positive   508/487-3998   C 
 MICHIGAN
   Detroit   ACT UP/Detroit   313/872-2427   A
   Detrt   Friends Alliance   313/836-2800   C
   Grand Rapids   PWAC Western Michigan   616/363-7689   C
   Grand Rapids   Grand Rapids AIDS Resource Center 616/459-9177   C 
 MINNESOTA
   Minneapolis   ACT UP/Minnesota   612/374-9349   A
   Minneapolis   The Aliveness Project   612/822-7946    BC 
 MISSISSIPPI
   Jackson   PWA/HIV Project   601/373-8610   C 
 MISSOURI
   Columbia   Mid-Missouri AIDS Proj.  314/875-2437   C 
  Positive Action   603/659-8442   C 
 NEW JERSEY
   Collingswo S. N.J. 609/854-7578   C
   Fort Lee   PWA Coalition N.J. 201/ ACT UP/New Jersey   609/771-6680 
   A 
 NEW MEXICO
   Albuquerque   NMAPLA   505/266-0342   C
   Albuquee   ACT UP/Albuquerque   505/268-0378   A
   Santa Fe   National Rural AIDS Network   505/986-8337   C
   Santa Fe   NMAPLA   505/982-5995   C 
 NEW YORK
   Albany   ACT UP/Youth Chapter of SUNY   518/432-9279   A
   Albany   ACT UP/Albany   518/463-8422   A
   Buffalo   AIDS Alliance of Western New York 716/852-6778 C
   Buffalo   ACT UP/Western New York   716/881-1459   A
   Long Island   ACT UP/Long Island   516/336-1258   A
   Long Island   PWA Coalition   516/225-5700   C
   New York City   ACT UP/New York   212/564-2437   A
   New York City   PWA Health Group   212/255-0520   B
   New York City   PWA Coalition New York   212/532-0290   C
   New York City   NY AIDS Coalition   212/675-7750   C
   Oneonta   ACT UP/SUNY Oneonta   607/432-3814   A
   Utica   ACT UP/Utica   315/853-6418   A 
 NORTH CAROLINA
   Research Triangle   ACT UP/Research Triangle   919/990- 1197   A 
 OHIO
   Cincinnati   GLMA/ACT UP   513/861-6171   A
   Cleveland   ACT UP/Cl228-0162   A 
 OKLAHOMA
   Oklahoma City   ACT UP/Oklahoma City   405/447-4209   A
   Oklahomher Options   405/728-3222   C 
 OREGON
   Portland   ACT UP/Columbia   503/240-0377   A
   Portlandregon Minority AIDS Coalition  503/293-5870  C 
 PENNSYLVANIA
   Philadelphia   ACT UP/Philadelphia   215/925-7121   A
   Philadelphia   We The People   215/545-6868   C
   Pittsburgh   Cry Out!/ACT UP   412/683-9741   A 
 PUERTO RICO
   Rio Piedras   Coalition of Positive People 809/753-9443C
   Santura   ACT UP de Puerto Rico   809/752-5123   A 
 RHODE ISLAND
   Providence   Lifeline PWA Coalition   401/421-5344   C 
 SOUTH DAKOTA
   Sioux Falls   ACT UP/South Dakota   605/332-3966   A 
 TENNESSEE
   Nashville  10   C 
 TEXAS
   Austin   ACT UP/Austin   512/477-2437   A
     AIDS Services of Austin   512/451-2273   C
   Dallas   ACT UP   Dallas   AIDS Resource Center   214/521-5124   C
   Dallas   AIDS Services of Dallas   214/941-0523   C
   Dallas   DBC Alternatives   214/528-4460   B
   Houston   ACT UP/Houston   713/433-2924   A
   Houston   PWA Coalition   713/522-5428   C 
 UTAH
   Salt Lake City   PWA Coalition Utah   801/484-2205   C 
 VERMONT
   Brattleboro   Vermont PWA Coalition   802/257-9277   C 
 WASHINGTON
   Seattle   ACe   206/726-1678   A
   Seattle People of Color Against AIDS Ne VIRGINIA
   Morgantown   Mtn.  State AIDS Network   304/292-9000   C 
 WISCONSIN
   Madison   ACT Up/Madison   608/251-7985   A
   Milwaukee   ACT Up/Milwaukee   414/769-8708   A
   Milwaukee   PLWA Coalition of Wisconsin   414/273-7592 
 WYOMING
   Casper   Wyoming AIDS Project   307/237-7833   C 

***** 

 AIDS TREATMENT NEWS Published twice monthly 
Subscription and Editorial Office:
   P. O. Box 4112141
   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 
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usually tried many different treatments, and found combinations which 
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therapies, but seeks to increase the options available. 
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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. 
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Newsgroups: sci.med.aids