postmaster@stjhmc.fidonet.org (David Dodell) (03/04/91)
copyright 1991 by John S. James;
permission granted for non-commercial use.
AIDS TREATMENT NEWS Issue #121, February 15, 1991
phone 800/TREAT-12, or 415/255-0588
CONTENTS: [item are separated by "*****" for this display]
AZT: Different for People of Color?
NAC: Major Laboratory Study Supports AIDS Treatment
Theory
Neuropathy: Answers Emerging?
Treatment Library: Books and Newsletters
Announcements: Women and HIV; Project Inform Hotline;
Chinese Herbal Program
***** AZT: Different for People of Color?
by John S. James
Data released this week from a U. S. Veterans Administration
(VA) study suggested that early treatment with AZT (for persons
with T-helper counts of 200 to 500) might not be helpful to
Blacks and Latinos, and might even be harmful. (The study did
not question later treatment, for anyone with T-helper count
under 200.) But three other studies found no racial difference
in the effect of AZT. And scientists reviewing the VA study
found the data "fragile," and suggested that it may well have
resulted just by unlucky chance. There is widespread concern
that results which could well be due to errors or statistical
happenstance may discourage people from seeking medical care.
The study, called VA Cooperative Study 298, was conducted at
veterans' hospitals in Houston, Los Angeles, Miami, New York, San
Francisco, and Washington, D. C., and at the Walter Reed Army
Medical Center. Volunteers entering the trial had to have T-
helper counts of 200 to 500, and symptoms of HIV infection but
not AIDS, to be eligible. They were randomly assigned to either
an early treatment group, which received AZT immediately, or a
later treatment group, which received a placebo at first. Later,
when T-helper counts dropped below 200 on two successive visits,
the placebo was stopped and all participants in the study
received AZT. All AZT doses were 1500 mg per day -- about three
times what most physicians use today. The goal of the study was
to learn whether starting AZT early would increase survival and
delay progression to AIDS. The trial was not designed to look
for racial differences.
For ethical reasons, study participants were offered
pneumocystis prophylaxis when it was officially recommended.
Also, when AZT was officially approved for early use, study
volunteers were notified, and some switched from blinded
treatment (either AZT or placebo) to AZT, at their request.
Overall Results
A total of 338 volunteers were enrolled in this study; 170
were assigned to receive early treatment (AZT immediately), and
168 assigned to receive placebo at first. The average age of the
volunteers was about 40; about two thirds of them were white, one
third Black or Latino.
The trial was stopped as planned in January 1991. When the
data was analyzed for all volunteers together -- not broken down
by race -- it was found that early treatment did clearly delay
progression to AIDS; 44 patients in the delayed-treatment group,
but only 25 in the early-treatment group, developed AIDS. But
early treatment showed no benefit in preventing death; 23 in the
early-treatment group died vs. 19 assigned to delayed treatment.
(This difference is too small to be statistically significant,
meaning that it could easily have occurred by chance.)
Two notable results of the study were that of six cases of
dementia, all were in the late-treatment group, suggesting that
AZT may have helped in preventing that condition. Also, of six
cases of lymphoma, five were in the late-treatment group,
suggesting that AZT may also have reduced the risk of lymphoma.
Racial Differences
The researchers were surprized at these inconsistent
results, so they looked more closely at the data to see what was
happening. They checked to see if results were different for IV
drug users compared to other patients, but no difference was
found.
When they checked for racial differences, they combined the
data for Blacks and Latinos, in order to have enough data in each
group to run statistical tests. For the minority groups, they
found no statistically significant benefit of AZT in delaying
progression to AIDS. But the statistics on death were especially
disturbing; nine Black or Latino volunteers in the early
treatment group died, but only one who received later treatment.
Also, early AZT treatment did not show the same benefit in T-
helper count for the people of color as it did for whites.
No one knows why this entirely unexpected result occurred.
Researchers who reviewed the study have suggested a number of
reasons to be skeptical about the results until more is known:
* No other study has found a racial difference in response
to AZT. Three major AZT studies were analyzed to look for such a
result, but none was found. How could three studies find no
racial difference in response to AZT, while a fourth finds a nine
to one difference among minorities with early AZT treatment, vs.
a survival advantage among whites? One obvious possibility is
that this difference in deaths happened by unlucky chance, and
did not reflect any real differences in how races respond to AZT.
* Another concern is that the VA study was analyzed by
"intent-to-treat" rules, meaning that volunteers were counted in
the treatment groups to which they were randomly assigned --
regardless of anything that might happen later. There are
advantages to this kind of analysis, but there are also
disadvantages; in the VA study, for example, deaths were counted
the same whether they were AIDS related, or due to other causes
including murder, suicide, traffic accident, or diseases not
believed to be related to HIV. We have not seen any analysis of
the study with these unrelated deaths excluded.
A particular problem with intent-to-treat rules in this case
is that when AZT was approved for persons with 200 to 500 T-
helper cells, study participants had to be given a choice to
switch to AZT if they wanted; it would not have been ethical to
give a placebo to persons in that T-helper range without their
consent. Many of the volunteers assigned to the later-treatment
arm did choose to switch; but under the intent-to-treat rules,
they had to be counted as late treatment, even if their AZT
actually began early. This change did not affect persons
assigned to early treatment, who were receiving AZT already.
* This study was not designed to look for racial
differences. It is easy to get misleading results when a study
is analyzed later in ways not originally planned or intended.
* Because the study was finished in January and presented to
other researchers in February, there was no time to complete the
analysis, or to thoroughly check the results.
* One theory being considered is that some races might
absorb AZT less well than others, when the drug is taken orally.
This possibility seems unlikely to account for the VA results,
however, since the dose used in that study was three times too
high. Unless the differences were enormous, poor absorption
would have been a benefit (in reducing side effects), not a
detriment.
On February 14 a number of physicians reviewed the VA data.
Almost all of them said that it would not affect their practice
of medicine, except that it might become one more item to be
discussed with the patient when the decision was made as to
whether or not to start AZT. No one wanted to change the
official FDA "labeling" which suggests that AZT be considered for
HIV-positive persons with T-helper counts under 500.
Concerns
The executive director of the National Minority AIDS
Council, Paul Kawata, urged caution in interpreting these
preliminary findings. "We must not send people of color with HIV
infection underground. This study has the potential to take away
hope for HIV infected minorities. It is much too early to draw
any definitive conclusions."
And Reggie Williams, executive director of the National Task
Force on AIDS Prevention, said that "We can not afford to give
Black people...any more excuses not to get tested, into early
intervention modes and yes, into clinical trials. Nor can we
afford to give those in government research and policymaking
positions a reason to further marginalize us from our fair share
of whatever is out there that may prolong life with HIV."
***** NAC: Major Laboratory Study Supports AIDS Treatment Theory
by John S. James
A laboratory study by Anthony Fauci, M. D., and other
scientists at the U. S. National Institute of Allergy and
Infectious Diseases, and at the Cornell University Medical
College in New York City, has confirmed and extended earlier work
by Dr. Leonard A. Herzenberg and colleagues at Stanford
University suggesting that n-acetylcysteine (NAC) can inhibit
growth of HIV. NAC is used in many European countries to treat
bronchitis; it is not approved for this use in the United States,
but has been available for over a year through buyers' clubs.
For background on this drug, see "NAC: Bronchitis Drug May
Slow AIDS Virus," AIDS TREATMENT NEWS #88, October 6, 1989; also
see issues # 92 and 93. Despite widespread public interest and
some scientific interest in the drug, no U. S. controlled trial
has yet begun; there are rumors of a trial in Europe, but no
results have been published. One monitoring study, in which
persons using NAC kept diaries, was organized by the Fight for
Life Committee, an AIDS activist group in North Lauderdale,
Florida in 1989. Preliminary results, which were positive, were
summarized in AIDS TREATMENT NEWS #92, December 1, 1989.
No laboratory study can prove that a drug is helpful for
people; only clinical trials can do that. But laboratory studies
can suggest which drugs should have priority for trials, and what
effects to look for (and therefore how the trials should be
designed). The recently published laboratory results will
certainly increase interest in NAC- -not as a potential cure or
means to control HIV or AIDS entirely, but as a safe and
available treatment which may be considerably helpful for some
patients.
The New Study
The recent NAC study, by a group headed by Fauci and by
Alton Meister, M. D., of Cornell, was published February 1 in
Proceedings of the National Academy of Sciences, USA (volume 88,
pages 986-990). Here is an overview of how this research was
conducted, and what it found.
The experimenters used a line of cells created in the
laboratory which have HIV as an inherited part of their DNA.
These cells have been used for studies of why HIV is usually
latent for many years, and only later becomes active and causes
serious disease. The researchers used three chemicals which are
known to greatly stimulate HIV activity in these cells: PMA,
tumor necrosis factor, and interleukin 6 (IL-6); two of these,
tumor necrosis factor and IL-6, are normally found in the body
and are known to be markedly increased in persons with AIDS. The
researchers tested NAC (and also two related substances) to see
if they could prevent this stimulation of viral activity caused
by each of the three chemicals. In all three cases, NAC did
prevent most of the stimulation of the virus.
NAC is believed to work primarily by increasing the level of
glutathione in cells. Glutathione is necessary for life; it
helps cells produce energy, and it also helps protect them
against oxidation; in addition, it may be an immune modulator,
necessary for T-cell activation. A German scientist, Dr. Wulf
Droge, at the German Cancer Research Center in Heidelberg, had
found that glutathione levels were deficient in cells of persons
with AIDS, and that the deficiency worsened as the disease
progressed; he was the first to suggest NAC as a potential AIDS
treatment, since it is known to raise glutathione levels.
Dr. Droge's work came to the attention of Doctors Leonard
Herzenberg and Leonore Herzenberg, who are husband and wife and
both members of the Genetics Department at Stanford University.
The Herzenbergs brought NAC as a possible AIDS treatment to the
attention of the U. S. scientific community. In June 1990 their
team published results, in the Proceedings of the National
Academy of Sciences, showing that NAC inhibited HIV replication
in a variety of laboratory tests.
The new study by Fauci, Meister, and others confirmed the
Herzenbergs' results. Also, to make sure that NAC was indeed
working by raising glutathione levels, the researchers ran
similar experiments, using glutathione itself, and also a
glutathione derivative, instead of NAC. All three substances did
inhibit HIV infection -- probably by more than one mechanism.
NAC was found to have an additional antiviral effect which the
other two did not have. These effects, especially the latter,
are not well understood. The research with NAC, as well as its
immediate importance in supporting the need for clinical trials
of this drug, is leading to further insights on how HIV becomes
activated in cells -- understanding which could lead to
treatments designed to keep the virus permanently inactive.
Comment: Practical Consequences
Anecdotal reports suggest that a minority of people who try
NAC feel much better, with benefits such as increased energy and
appetite, but that most do not notice any change. We checked
with buyers' clubs and found that a number of people have
continued to use NAC during the last year, but that the demand
has been limited when no new scientific information and resulting
media coverage has come out.
The following suggestions have come from our conversations
with several people familiar with NAC:
* Persons who try the treatment and feel markedly better
during the first two weeks should definitely continue. In these
cases, NAC may be correcting an abnormally low level of
glutathione within cells.
* If no change is noticed, then it is hard to tell whether
or not the treatment is doing any good. In some people, T-
helper counts have increased, but it may take months to get this
effect. There are suggestions that NAC may help stabilize people
with HIV infection, or may speed recovery from opportunistic
infections, but it is too early to know if there is any real
benefit.
* The best formulations of NAC are generally believed to be
those made in Europe for treating bronchitis. Three different
kinds are available from the PWA Health Group, 212/532-0280; this
buyers' club will fill mail orders. Doses used generally range
from 600 to 1800 mg per day, with those who are more seriously
ill using the higher doses. While glutathione itself is sold in
some health-food stores, one expert we talked to said that it
would not be effective.
U. S. researchers have been trying to start a clinical trial
of NAC for the last two years, but commercial and bureaucratic
obstacles have prevented any such study from starting.
Researchers at the U. S. National Institutes of Health are now
seeking FDA permission to begin a trial.
***** Neuropathy: Answers Emerging?
by Denny Smith
Neuropathy has become a problem for many people with HIV
infection, and can develop for a variety of reasons. Fortunately,
it might be controllable with a number of promising treatments,
many already available for other purposes.
The progression of HIV alone can apparently lead to two
different disorders of the peripheral nervous system. One kind
is a painful sensory dysfunction resulting from the degeneration
of the axon, the component of nerve cells responsible for
conducting impulses. The other, less frequent, neuropathy
results in a motor weakness caused by an inflammatory process
which damages the myelin covering the nerve fibers. This kind
may resemble "myopathy," a discomfort or fatigue of muscle
fibers, which is also identified with HIV or with long-term use
of AZT.
Other possible causes of neuropathy include some
opportunistic infections and tumors, as well as some of the drugs
used in HIV/AIDS therapies (such as ddI, ddC, interferon and
certain chemotherapies). Distinguishing the cause or type of
neuropathy is important for deciding which treatment approach to
take. Discontinuing a medication from which neuropathy has been
known to result may resolve the symptoms completely, especially
if done in a timely manner. But if an infection or medication is
determined not to be the cause, nerve conduction tests may help
with a diagnosis.
Much of the previous medical literature discussing
neuropathy came from experimental approaches for the often
painful neuropathy experienced by people with diabetes. Research
into diabetic neuropathy has suggested a number of possibilities,
and achieved some limited successes.
Among these are a number of treatments already licensed for
other indications: piroxicam, plasmapheresis, calcitonin (nasal
spray), capsaicin, antiarrhythmia drugs like mexiletine and
lidocaine (intravenous), antidepressants such as nimodipine,
imipramine, desipramine or fluoxetine, anticonvulsants like
phenytoin, and narcotics for very painful neuropathy.
Some others, regarded generally as investigational agents,
are coenzyme Q-10, gamma-linolenic acid, prostaglandin E1, and
tolrestat.
We interviewed two physicians familiar with aspects of HIV-
related neuropathy: Ari Ganer, M. D., of the Santa Clara Valley
Medical Center, and Harry Hollander, M. D., at the University of
California San Francisco.
Dr. Hollander told us that, although the rationales for
trying some of these drugs theoretically would apply to HIV as
well as to diabetic neuropathy, their side effects are not
dependably uniform: a treatment reported to be safe in one
situation might not be so in the other. He told us that
antidepressants are usually tried first for symptomatic relief;
if they fail, he follows with an anticonvulsant, noting that the
course of neuropathy and the sequence of drug choices are
variable for every patient.
Dr. Ganer and Dr. Stanley Deresinski are studying mexiletine
to treat HIV-related neuropathy in a controlled clinical trial
sponsored by a community-based research organization, the AIDS
Community Research Consortium (ACRC). This trial is funded by
the American Foundation for AIDS Research (AmFAR), and has two
sites south of San Francisco, both of which are open to more
participants. This study employs the "crossover" design, so that
for the first half of the study, some patients will be given
mexiletine, the others a placebo. After a short "washout"
period, the placebo and active drugs are switched. Neither the
investigators nor participants know when active drug was given
until the study is finished.
Nevertheless, patterns are often apparent in crossover
trials if the treatment is making a difference. Dr. Ganer said
that he is encouraged by preliminary impressions of the study:
some people have obviously experienced significant relief from
the symptoms of neuropathy during part of the trial. The only
measures of response in the study are the patients' reports of
pain or pain relief.
Brian Camp, RN, the clinical coordinator of the Redwood City
site, shared similar impressions, and hopes to see neuropathy
studies expanded in scope and number.
Of the other agents discussed as potential treatments for
HIV-associated neuropathy, Dr. Ganer thinks capsaicin is a good
candidate for clinical trials, alone or in combination with
mexiletine. Two pharmaceutical preparations containing capsaicin
are already marketed for treating the discomfort of herpes zoster
(shingles) lesions. Both are supplied as creams; one of them,
Axsain, contains a 0.075% concentration of capsaicin, and the
other, Zostrix, contains 0.025%. [Note: capsaicin is the
component of hot peppers which makes them hot.]
If the mexiletine trial proves useful, Dr. Ganer hopes to
expand HIV neuropathy trials to test capsaicin, or other agents.
He remarked that surprisingly little attention has been paid to
this common problem. The current trial is recruiting people with
neuropathy resulting from HIV, but future studies will probably
accept people with drug-induced symptoms as well. Persons
interested in this study can contact the Santa Clara Valley
Medical Center site at 408/299-5588, or the Redwood City site at
415/364-6563.
AmFAR has granted the ACRC funding for expanded trials. Of
course, since mexiletine, capsaicin and some of the other
possibilities mentioned above are already available by
prescription, physicians and patients have access to those drugs
now, without enrolling in a trial. Meanwhile, AIDS TREATMENT NEWS
welcomes anecdotal reports of experience with treating neuropathy
from our readers.
References
Parry, GJ, Kozu H. Piroxicam may reduce the rate of progression
of experimental diabetic neuropathy. Neurology, volume 40, number
9, pages 1446-1449, September 1990.
Zieleniewski W. Calcitonin nasal spray for painful diabetic
neuropathy. (letter) The Lancet, volume 336, number 8712, page
449, August 18, 1990.
Boulton AJ, Levin S, Comstock J. A multicentre trial of the
aldose-reductase inhibitor, tolrestat, in patients with
symptomatic diabetic neuropathy. Diabetologia, volume 33, number
7, pages 431-437, July 1990.
Nakamura Y, Takahashi M. Clinical application of prostaglandin on
peripheral neuropathy. Nippon Rinsho, volume 48, number 6, pages
1224-1228, June 1990.
Jamal GA, Carmichael H. The effect of gamma-linolenic acid on
human diabetic peripheral neuropathy: a double- blind placebo-
controlled trial. Diabetic Medicine, volume 7, number 4, pages
319-323, May 1990.
Kastrup J, Petersen P, Dejgard A. Intravenous lidocaine and
cerebral blood flow: impaired microvascular reactivity in
diabetic patients. Journal of Clinical Pharmacology, volume 30,
number 4, pages 318-323, April, 1990.
Egbunike IG, Chaffee BJ. Antidepressants in the management of
chronic pain syndromes. Pharmacotherapy, volume 10, number 4,
pages 262-270, 1990.
Masson EA, Boulton AJ. Aldose reductase inhibitors in the
treatment of diabetic neuropathy. A review of the rational and
clinical evidence. Drugs, volume 39, number 2, pages 190-202,
February, 1990.
Hollander, H. Peripheral neuropathy and HIV infection. AIDSFILE,
volume 3, number 2, page 1, June 1988.
***** Treatment Library: Books and Newsletters
by John S. James
An organization or an individual can set up a basic AIDS
library for relatively little cost. A few reference books,
newsletters, and referral phone numbers are most important as the
core reference materials. After that, there are many directions
in which a library can evolve, and specialization is appropriate,
as few could afford to be comprehensive. This article provides
an annotated list of basic materials, a starting point which will
make an AIDS treatment library immediately useful.
The section on reference books, below, is central; an AIDS
treatment library can provide a core of current information and
make itself useful for under $200. The other lists, of AIDS
newsletters and of "alternative" information sources, include
more optional items, which some libraries will choose not to
carry. We have not included academic medical and scientific
journals in this article; we may publish a list in a future
issue.
The standard medical books can best be found at a bookstore
with a good medical department (in San Francisco, for example, we
usually check the bookstore at the University of California San
Francisco Medical Center, 500 Parnassus Avenue -- or the medical
section of Stacey's Books, 581 Market Street). If no store is
convenient, the books can usually be ordered from the publisher.
For newsletters, we include contact or ordering information.
Reference Books
* Introductory handbook for patients. Early Care for HIV
Disease, by Ronald A. Baker, Ph.D., Jeffrey M. Moulton, Ph.D.,
and John Charles Tighe, 1991, published by the San Francisco AIDS
Foundation, 415/863-2437, or 800/367- 2437 (from Northern
California), $9.95. This 108-page book, released last week, is a
first introduction for persons who have learned that they are HIV
positive. It includes topics such as finding a doctor,
understanding blood tests, nutrition and food safety, drugs
(including AZT, ddI, and ddC, interferon, GM-CSF, and combination
therapies), clinical trials, expanded access, paying for medical
care and obtaining public assistance when necessary, and finding
psychosocial support. An excellent resource list includes phone
numbers for local and national hotlines throughout the United
States, six different Spanish hotlines, a Filipino hotline,
addresses and phone numbers for over two dozen minority AIDS
organizations, and an annotated list of 20 AIDS newsletters and
other publications; an organization with an AIDS library might
want to photocopy this hotline and resource list for easy
reference by library users. The book includes a glossary to
define the medical terms it uses.
* Medical dictionary. Webster's Medical Desk Dictionary,
Merriam-Webster Inc., Springfield, Massachusetts, 1986, $21.95,
is clearly written and accessible to a general audience. If you
want a more technical dictionary, consider Dorland's Illustrated
Medical Dictionary, W. B. Sauders Company, Philadelphia, 1988;
Dorland's is written primarily for physicians.
* Drug book(s). We usually use Nursing91 Drug Handbook,
Springhouse Corporation, Springhouse, Pennsylvania, 1991, $21.95.
It is updated every year, and the information it presents on each
drug is practical and well written. This handbook is organized
by classes of drugs, rather than one alphabetical list, so
patients can learn about other potential treatment options, which
might be necessary if a drug prescribed for them causes side
effects.
Many people use the Physicians' Desk Reference (the "PDR")
as their basic book on approved drugs. The 1991 edition is
available now in bookstores for $49.95. It is thorough and
authoritative, as it contains the official "labeling," what the
FDA allows drug manufacturers to say about each drug. The PDR is
not as convenient to use as the nursing handbook; for example, it
is organized by drug manufacturer, not by type of drug. But the
PDR is more thorough, especially on side effects. A good library
should consider both.
Another option is Handbook of Drugs for Nursing Practice, by
Virginia Karb and others, the C. V. Mosby Company, St. Louis,
1989, $28.95. We would choose this book over the other two
except for the fact that the latest edition now available is two
years old, and AIDS drug information changes rapidly.
* AIDS textbook. We recommend The Medical Management of
AIDS, Second Edition, by Merle A Sande, M. D., and Paul A
Volberding, M. D., W. B. Saunders Company, Philadelphia, 1990,
$45. This book, edited by two professors at the Department of
Medicine of the University of California San Francisco, was
written by dozens of leading AIDS experts. Chapters include
early HIV infection, dermatologic care, oral manifestations of
AIDS, gastrointestinal disease, neurologic complications,
hematologic manifestations, and cardiac, endocrine, and renal
complications. There are also chapters on pneumocystis,
toxoplasmosis, cryptococcal meningitis, fungal infections,
mycobacterial diseases, salmonella and other encapsulated
bacteria, herpes virus infections, and malignancies. Other
sections examine epidemiology, prevention of transmission,
pathogenesis, children with AIDS, and legal issues. Most
chapters have dozens of references. This book is written for
physicians; the general reader will need a medical dictionary to
follow parts of it. Be sure to get the second edition, since the
first was published in 1988 and is now out of date.
* Directory of AIDS treatments. The AIDS/HIV Treatment
Directory is published by the American Foundation for AIDS
Research, 1515 Broadway, Suite 3601, New York, NY 10036-8901,
212/719-0033, updated quarterly, $30 per year. This directory
focuses primarily on experimental treatments now in clinical
trials for HIV, opportunistic infections, malignancies, and other
AIDS-related complications. The entries are continually updated;
sometimes drug information appears in the Directory before it is
published anywhere else. Besides the listings of treatments and
clinical trial sites, editions include other useful information;
for example, the December 1990 issue includes an article on
combination therapies, a list of compassionate use and treatment
IND programs, a list of community-based trial organizations, a
list of U. S. AIDS Clinical Trials Group centers, an index of
drug manufacturers, a glossary, and an extensive list of AIDS
newsletters and other information sources.
* How to get medical benefits. The AIDS Benefits Handbook,
by Thomas P. McCormack, Yale University Press, 1990, is "a brief
encyclopedia of income, health, and housing programs for the
disabled," including information on state-by-state variations.
It explains SSDI, SSI, AZT assistance, Medicaid, General
Assistance, Emergency Assistance, Food Stamps, and others,
including "several programs of real potential for aiding PWAs,
but which are far less well known to the AIDS advocacy community
and therefore not used nearly to their potential: the Hill-
Burton, state or local indigent medical assistance and private
charity programs available in many hospitals; State Supplementary
Payment (SSP) programs to finance PWA group housing in 'board and
care homes'; and state-run drug (and even health insurance)
subsidy programs." [Note: a brief announcement of this book
appeared in AIDS TREATMENT NEWS #105, June 15, 1990.]
Treatment Newsletters
At last count, there were well over 100 periodical
publications devoted solely to AIDS. We cannot evaluate them
all; if we have missed some which you believe should be listed,
please let us know. Note that this list does not include many
specialized newsletters, such as local clinical-trials
directories, or newsletters not primarily about treatment.
The first three listed below often cover some of the same
material as AIDS TREATMENT NEWS, with articles on treatments and
interviews with physicians. Of the four, BETA is probably the
most conservative; AIDS TREATMENT NEWS is usually regarded as
most willing to venture outside of the medical mainstream.
* Treatment Issues, published ten times a year by the Gay
Men's Health Crisis, 129 West 20th St., New York, NY, 10011, $20
suggested donation for a one-year subscription.
* PI Perspectives, published several times a year by Project
Inform, 347 Dolores, Suite 301, San Francisco, CA, 94110.
415/558-9051 from San Francisco and other countries, 800/334-7422
from rest of California, 800/822-7422 from U. S. locations
besides California; $25 suggested donation for information packet
and subscription.
* Bulletin of Experimental Treatments for AIDS (BETA),
published four times a year by the San Francisco AIDS Foundation,
$35 per year. For subscription information call 415/863-AIDS
from San Francisco and other countries, 800/327-9893 from
elsewhere in the United States, 415/861-3397 for information
about bulk orders.
Positive News is another newsletter also published quarterly
by the San Francisco AIDS Foundation. It is free and appears in
four languages: English, Spanish, Tagalog, and Chinese.
Described by the Foundation as "a low- literacy newsletter on
issues affecting people with HIV infection," Positive News
contains little treatment information; it is important because it
provides AIDS information in several languages.
* Notes from the Underground, published six times a year by
the PWA Health Group, 31 West 26th St., 4th Floor, New York, NY,
10010, 212/532-0280, $35 individual, $75 institutions/physicians;
send a self-addressed stamped envelope for a free sample copy.
The January 1991 issue includes articles on azithromycin, a guide
on where to get non-approved drugs, an article on pricing at the
PWA Health Group (which is a non-profit buyers' club), and
important testimony by executive director Derek Hodel to the
Congressionally-mandated AIDS Research Advisory Committee.
* Treatment & Research Forum, published monthly by the
Community Research Initiative, 31 West 26th Street, 3rd floor,
New York, NY 10010, 212/481-1050, donation requested. Includes
information on drugs being studied by the Community Research
Initiative, one of the oldest and largest community-based AIDS
research organizations, and other treatments of interest.
* AIDS Medical Report, published monthly by American Health
Consultants, 67 Peachtree Park Drive, NE, Atlanta, GA, 30309,
800/688-2421, $149 for subscription ($199 with CME credit).
Written for physicians, this newsletter usually has one in-depth,
practical report per issue on standard-of-care treatments.
* Critical Path AIDS Project, published monthly by the AIDS
Library of Philadelphia, 32 N. 3rd St., Philadelphia, PA, 19106.
215/545-2212, $15 or contribution of choice for subscription,
free to people with HIV. Publishes in-depth articles, often
reprinted from elsewhere, on treatments, as well as prevention
and services, including listings of support groups in the
Philadelphia area.
* AIDS Medicines in Development, quarterly survey of most
investigational agents currently in AIDS research, published by
the Pharmaceutical Manufacturers Association, 1100-15th St., NW,
Washington, DC, 20005. No cost; send written request for
subscription.
* Treatment Update, and Traitement Sida, published by AIDS
Action Now!, 517 College Street, Suite 324, Toronto, Ontario,
Canada M6G 1A8. 416/944-1916. Varied subscription prices.
Notes on research and treatment ideas.
* STEP Perspective, published by the Seattle Treatment
Education Project, 1535-11th Ave, Suite 203, Seattle, WA, 98122.
206/329-4857. $15 or more suggested contribution for
subscription. Well researched articles on treatment studies.
* Washington HIV News, Box 3933, Merrifield, VA 22116-3933,
202/797-3590. Published in cooperation with the Whitman-Walker
Clinic, Washington HIV News includes medical news and education,
and information about new treatments, especially those in
clinical trials. Subscriptions (four issues) are free for persons
with AIDS, otherwise $8 individual rate, $80 institutional rate.
Phone or write for free sample issue.
* ATIN: AIDS Targeted Information Newsletter, sponsored by
the American Foundation for AIDS Research, published monthly by
Williams and Wilkins, P. O. Box 23291, Baltimore, MD 21203-9990,
800/638-6423 (in Maryland call 800/638-4007), $125 per year
individual, $275 institution. This review of the medical and
scientific literature on AIDS has several hundred citations in
each issue, with brief reviews, sometimes quite technical, of the
most important articles.
* The treatment committees of at least three ACT UPs now
publish newsletters. Some articles report on treatments, others
discuss business, such as meetings with pharmaceutical companies
or government agencies. Because these groups are in the forefront
of treatment activism, the newsletters include information not
otherwise available. For more information, call the numbers
below:
* ACT UP/New York Treatment and Data Committee: The
Treatment and Data Digest. Call Mike Barr at 212/982- 8206, or
Chris DeBlasio at 212/420-8432.
* ACT UP/Los Angeles Treatment and Data Committee: Treatment
Issues Report. Call Wade at 213/841-2631, or the ACT UP office
at 213/669-7301.
* ACT UP/Golden Gate Treatment Issues Committee: Treatment
Issues Report. Call the ACT UP office at 415/252-9200, or
Michael Wright at 415/864-6305.
Alternative (Complementary) Treatment Information
It is hard to judge information about potential treatments
which are in some way outside of the medical mainstream. Some
guidelines can be given, however:
* Even for non-mainstream treatments, there is almost always
some background information published in credible medical or
scientific journals; if there were not, the proposed treatment
would clearly not be ready for use except by qualified research
institutions. (Persons should be aware, however, that
unscrupulous promoters sometimes provide impressive-looking but
irrelevant references, knowing that most people will not follow
up and discover that the cited articles do not support the claims
the promoter is making.)
* Besides the medical literature, the background and motives
of those interested in the treatment can be considered. Is the
information about it coming from a nonprofit or community-based
AIDS organization, or from a promoter with a scheme to make
money?
* Particular danger signs are secret remedies, or any
attempt to keep patients from obtaining standard medical care, or
from discussing all treatments they plan to use with their
physicians. Quacks often try to cut their victims off from other
information sources, to increase their own control.
Patients should tell their physicians about all treatments
they are considering; both parties should seek to build
relationships where this is possible. Physicians are busy; few
have time to follow the latest research on everything their
patients may be interested in, and some are threatened when
patients ask questions they cannot answer. Still, complementary
treatments should be discussed, in case there is important
information, especially precautions or other safety concerns,
which may apply particularly to the individual patient because of
his or her health status, or because of drugs the physician has
prescribed. [Note: We prefer the term "complementary" to
"alternative," to emphasize that any unproven treatment
possibilities should be used in addition to good-quality standard
medical care, not instead of it. Also note: for more
information on the physician-patient relationship, see "Managing
Your Doctor," by Michelle Roland, AIDS TREATMENT NEWS #111,
September 21, 1990.]
Disclaimer: we have listed the following information
sources as a starting point for a complementary- treatment
section of an AIDS library. But we cannot be as confident about
non-standard treatment information as we can be about standard
medical information, such as that found in medical dictionaries
or in drug handbooks. While we believe that the following sources
are usually correct in summarizing information from the medical
and scientific literature, we could not check everything; in
addition, some of the writers have strong viewpoints or
preconceptions which need to be taken into account. We urge
readers not to rely on any single source as authoritative, but to
follow up by seeing additional information about any treatment
options which interest them.
This list is not complete; there are many useful
publications not included here. Some entire areas are omitted --
Chinese medicine, for example -- not because we dismiss them, but
because we are not prepared to cover them well.
The items listed below are extremely diverse. We cannot
vouch for all of the information they contain. We have listed
each item because we believe that some of our readers will want
to know about it.
The books may be available in AIDS sections of gay or
medical bookstores. For newsletters, and sometimes also for
books, we include mailing addresses and telephone numbers.
* Surviving AIDS, by Michael Callen, Harper Collins
Publishers, 1990. This is not primarily a book about treatments,
but rather is based on interviews with long-term survivors. The
author, one of the founders of both the People with AIDS
Coalition and the Community Research Initiative in New York, was
diagnosed with AIDS in 1982 (before the term "AIDS" existed), and
given a short time to live; he is still alive and active today,
over eight years later. Aside from the interviews, other
chapters include "Why Some Survive," "The Propaganda of
Hopelessness," "Making Sense of Survival" (summarizing what he
learned from his continuing study of survivors), "What I Would Do
If I Were You," and "The Case Against AZT."
* Living with the AIDS Virus, by Parris M. Kidd, Ph.D., and
Wolfgang Huber, Ph.D., 1990, HK Biomedical, Inc -- Educational
Division, P. O. Box 8207, Berkeley, CA 94707, phone 415/527-6871.
This 182-page book provides an easy-to-read overview of most of
the better-known complementary and experimental treatments.
While there are chapters on AZT and the biology of HIV, the main
emphasis is on nutritional approaches, especially egg lecithin
lipids (i.e., AL-721) and "natural" antioxidants, reflecting Dr.
Kidd's background as a consultant on nutritional supplements.
* HEAL (Health Education AIDS Liaison) is preparing an
updated version of its AIDS Information Packet on Alternative &
Holistic Therapies for AIDS. We have not seen this packet, which
should be available in about three weeks; the previous version
was 150 pages. HEAL requests a donation of $12.50 or more for
the packet, but will send it without charge to anyone who cannot
afford to donate. HEAL, a nonprofit organization, holds
treatment meetings in New York; it also plans to publish a
quarterly newsletter. For more information, send a self-
addressed stamped envelope to: HEAL, P. O. Box 1103, Old Chelsea
Station, New York, NY 10113, or call 212/674- HOPE.
* Nutritional Influences on Illness, Melvyn R. Werbach, M.
D., 1988, 1990, Keats Publishing, Inc., New Canaan, Connecticut,
203/966-8721, $17.95 (paperback). This 504-page book by an
assistant professor at the University of California Los Angeles
School of Medicine is not about AIDS -- which does not even
appear in the index. Instead, the book has chapters on 92
different diseases, each one reviewing the medical and scientific
literature suggesting that certain foods or nutrients may be
helpful (or in some cases harmful) in its treatment. While few of
the conditions covered are AIDS related, persons with AIDS or HIV
might find ideas worth trying.
* Smart Drugs and Nutrients, by Ward Dean, M. D., and John
Morgenthaler, 1990, B&J Publications, Santa Cruz, CA 800/669-
2030. This book, released in January 1991, is subtitled "How to
Improve Your Memory and Increase Your Intelligence Using the
Latest Discoveries in Neuroscience." It is not about AIDS;
instead it reviews scientific studies of several dozen drugs
which some researchers believe may improve mental functioning.
Drugs are regularly prescribed for this purpose in some
countries, but in the U. S. the concept has so far not been
accepted. We mention the book here for research interest,
because of the possibility that some of the drugs might be
helpful in treating AIDS-related neurological problems. As far as
we know, however, no studies to test this possibility have ever
been done.
A two-part article on cognition-enhancement drugs is also
being published by Megabrain Report: The Psychotechnology
Newsletter, P. O. Box 2744, Sausalito, CA 94965.
* Forefront Health Investigations, published six times a
year by MegaHealth Society, P. O. Box 60637, Palo Alto, CA 94306,
408/733-2010. Originally called Journal of the MegaHealth
Society and focusing on "health information on life extension and
biological technology," Forefront recently changed its name and
has begun to include more information on AIDS and HIV; for
example, the December 1990 issue includes an article on anabolic
steroids as a proposed treatment for wasting syndrome, and an
article on yeast infections (not AIDS-related, but possibly
useful with AIDS). The previous issue discussed combining AZT
with ddC or with ddI.
***** Announcements
** San Francisco: Forum on Women and HIV
The AIDS Health Project is sponsoring a public forum on
women living with HIV, to be held Wednesday, February 27, 1991,
from 7-9 p.m., at 1855 Folsom Street, Room 125. The forum will
feature panel discussions and workshops on the gynecological
manifestations of HIV, treatments and therapies, and clinical
trials relevant to women. The forum is free, and sign
interpretation is available. For more information, call
415/476-3902.
** Project Inform Expands Treatment Hotline Hours
Project Inform has expanded the hours of operation of its
national HIV treatment information hotline, which will now be
available Monday through Friday, 10 a.m. - 4 p.m., and Saturday,
10 a.m. - 1 p.m., (Pacific Time). The hotline is staffed by
trained volunteers who can provide accurate, up-to-date
information on specific treatments and treatment strategies for
all stages of HIV infection, including early intervention.
The hotline numbers are: 800/822-7422 (U. S. outside
California), 800/334-7422 (California), or 415/558-9051 (San
Francisco, or international).
** San Francisco: Chinese Herbal Program Beginning
The Immune Enhancement Program has designed a new 12-week
program for researching the immune enhancing and antiviral
potential of selected Chinese herbal therapies. The program will
begin March 6, and costs $190, which includes monthly
acupuncture, and support groups.
To register or to ask for more information, interested
persons can call 415/252-8711.
** Correction: ATIN phone number
Issue #120 of AIDS TREATMENT NEWS included an erroneous
toll-free phone number for AIDS Targeted Information Newsletter
(ATIN), for calling from all states except Maryland. The correct
number is 800/638-6423.
***** 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.
***** How to Subscribe to AIDS TREATMENT NEWS by mail
Send $100 per year for 24 issues ($100 for nonprofit
organizations, $200 for businesses and institutions), or $40
reduced rate for persons with AIDS or related conditions who
cannot afford the regular rate, to: ATN Publications, P. O. Box
411256, San Francisco, CA 94141. A six-month subscription (12
issues) is $55 for individuals or nonprofits, $110 for businesses
and institutions, or $20 reduced rate. For subscription
information and a sample issue, call 800/TREAT-12 (800/873-2812),
or 415/255- 0588.
To order back issues, send $18 for issues #1 through #75,
plus the per-issue cost for each later issue you need. The per-
issue cost is $1 reduced rate, $2 individual or nonprofit rate,
and $4 for businesses and institutions (Note that issues 1
through 75 are also available through bookstores, at a retail
price of $12.95.) The back issues include articles on ddI,
compound Q, clarithromycin, azithromycin, fluconazole, AZT,
aerosol pentamidine, ganciclovir (DHPG), diclazuril, DHEA,
peptide T, passive immunotherapy, hypericin, and many other
treatments.
Outside North America, add $20 per year for airmail postage,
$6 airmail for back issues #1 through #75, and $.50 for each
additional issue. Outside U. S. A., send U. S. funds by
international postal money order, or by travelers checks, or by
drafts or checks on U. S. banks.
To protect your privacy, we mail first class without
mentioning AIDS on the envelope, and we keep our subscriber list
confidential.
Copyright 1991 by John S. James. Permission granted for
non-commercial reproduction, provided that our address and phone
number are included if more than short quotations are used.
--
-------------------------------------------------------------------------
St. Joseph's Hospital and Medical Center, Phoenix, Arizona
uucp: {gatech, ames, rutgers}!ncar!asuvax!stjhmc!ddodell
Bitnet: ATW1H @ ASUACAD FidoNet=> 1:114/15
Internet: postmaster@stjhmc.fidonet.org FAX: +1 (602) 451-1165ddodell@stjhmc.fidonet.org (David Dodell) (03/04/91)
Please excuse me if this is a duplicate posting, but I never received
confirmation of the original one going through.
David Dodell
Co-moderator, sci.med.aids
--------
AIDS TREATMENT NEWS Issue #121, February 15, 1991
phone 800/TREAT-12, or 415/255-0588
copyright 1991 by John S. James;
permission granted for non-commercial use.
CONTENTS: [item are separated by "*****" for this display]
AZT: Different for People of Color?
NAC: Major Laboratory Study Supports AIDS Treatment
Theory
Neuropathy: Answers Emerging?
Treatment Library: Books and Newsletters
Announcements: Women and HIV; Project Inform Hotline;
Chinese Herbal Program
***** AZT: Different for People of Color?
by John S. James
Data released this week from a U. S. Veterans Administration
(VA) study suggested that early treatment with AZT (for persons
with T-helper counts of 200 to 500) might not be helpful to
Blacks and Latinos, and might even be harmful. (The study did
not question later treatment, for anyone with T-helper count
under 200.) But three other studies found no racial difference
in the effect of AZT. And scientists reviewing the VA study
found the data "fragile," and suggested that it may well have
resulted just by unlucky chance. There is widespread concern
that results which could well be due to errors or statistical
happenstance may discourage people from seeking medical care.
The study, called VA Cooperative Study 298, was conducted at
veterans' hospitals in Houston, Los Angeles, Miami, New York, San
Francisco, and Washington, D. C., and at the Walter Reed Army
Medical Center. Volunteers entering the trial had to have T-
helper counts of 200 to 500, and symptoms of HIV infection but
not AIDS, to be eligible. They were randomly assigned to either
an early treatment group, which received AZT immediately, or a
later treatment group, which received a placebo at first. Later,
when T-helper counts dropped below 200 on two successive visits,
the placebo was stopped and all participants in the study
received AZT. All AZT doses were 1500 mg per day -- about three
times what most physicians use today. The goal of the study was
to learn whether starting AZT early would increase survival and
delay progression to AIDS. The trial was not designed to look
for racial differences.
For ethical reasons, study participants were offered
pneumocystis prophylaxis when it was officially recommended.
Also, when AZT was officially approved for early use, study
volunteers were notified, and some switched from blinded
treatment (either AZT or placebo) to AZT, at their request.
Overall Results
A total of 338 volunteers were enrolled in this study; 170
were assigned to receive early treatment (AZT immediately), and
168 assigned to receive placebo at first. The average age of the
volunteers was about 40; about two thirds of them were white, one
third Black or Latino.
The trial was stopped as planned in January 1991. When the
data was analyzed for all volunteers together -- not broken down
by race -- it was found that early treatment did clearly delay
progression to AIDS; 44 patients in the delayed-treatment group,
but only 25 in the early-treatment group, developed AIDS. But
early treatment showed no benefit in preventing death; 23 in the
early-treatment group died vs. 19 assigned to delayed treatment.
(This difference is too small to be statistically significant,
meaning that it could easily have occurred by chance.)
Two notable results of the study were that of six cases of
dementia, all were in the late-treatment group, suggesting that
AZT may have helped in preventing that condition. Also, of six
cases of lymphoma, five were in the late-treatment group,
suggesting that AZT may also have reduced the risk of lymphoma.
Racial Differences
The researchers were surprized at these inconsistent
results, so they looked more closely at the data to see what was
happening. They checked to see if results were different for IV
drug users compared to other patients, but no difference was
found.
When they checked for racial differences, they combined the
data for Blacks and Latinos, in order to have enough data in each
group to run statistical tests. For the minority groups, they
found no statistically significant benefit of AZT in delaying
progression to AIDS. But the statistics on death were especially
disturbing; nine Black or Latino volunteers in the early
treatment group died, but only one who received later treatment.
Also, early AZT treatment did not show the same benefit in T-
helper count for the people of color as it did for whites.
No one knows why this entirely unexpected result occurred.
Researchers who reviewed the study have suggested a number of
reasons to be skeptical about the results until more is known:
* No other study has found a racial difference in response
to AZT. Three major AZT studies were analyzed to look for such a
result, but none was found. How could three studies find no
racial difference in response to AZT, while a fourth finds a nine
to one difference among minorities with early AZT treatment, vs.
a survival advantage among whites? One obvious possibility is
that this difference in deaths happened by unlucky chance, and
did not reflect any real differences in how races respond to AZT.
* Another concern is that the VA study was analyzed by
"intent-to-treat" rules, meaning that volunteers were counted in
the treatment groups to which they were randomly assigned --
regardless of anything that might happen later. There are
advantages to this kind of analysis, but there are also
disadvantages; in the VA study, for example, deaths were counted
the same whether they were AIDS related, or due to other causes
including murder, suicide, traffic accident, or diseases not
believed to be related to HIV. We have not seen any analysis of
the study with these unrelated deaths excluded.
A particular problem with intent-to-treat rules in this case
is that when AZT was approved for persons with 200 to 500 T-
helper cells, study participants had to be given a choice to
switch to AZT if they wanted; it would not have been ethical to
give a placebo to persons in that T-helper range without their
consent. Many of the volunteers assigned to the later-treatment
arm did choose to switch; but under the intent-to-treat rules,
they had to be counted as late treatment, even if their AZT
actually began early. This change did not affect persons
assigned to early treatment, who were receiving AZT already.
* This study was not designed to look for racial
differences. It is easy to get misleading results when a study
is analyzed later in ways not originally planned or intended.
* Because the study was finished in January and presented to
other researchers in February, there was no time to complete the
analysis, or to thoroughly check the results.
* One theory being considered is that some races might
absorb AZT less well than others, when the drug is taken orally.
This possibility seems unlikely to account for the VA results,
however, since the dose used in that study was three times too
high. Unless the differences were enormous, poor absorption
would have been a benefit (in reducing side effects), not a
detriment.
On February 14 a number of physicians reviewed the VA data.
Almost all of them said that it would not affect their practice
of medicine, except that it might become one more item to be
discussed with the patient when the decision was made as to
whether or not to start AZT. No one wanted to change the
official FDA "labeling" which suggests that AZT be considered for
HIV-positive persons with T-helper counts under 500.
Concerns
The executive director of the National Minority AIDS
Council, Paul Kawata, urged caution in interpreting these
preliminary findings. "We must not send people of color with HIV
infection underground. This study has the potential to take away
hope for HIV infected minorities. It is much too early to draw
any definitive conclusions."
And Reggie Williams, executive director of the National Task
Force on AIDS Prevention, said that "We can not afford to give
Black people...any more excuses not to get tested, into early
intervention modes and yes, into clinical trials. Nor can we
afford to give those in government research and policymaking
positions a reason to further marginalize us from our fair share
of whatever is out there that may prolong life with HIV."
***** NAC: Major Laboratory Study Supports AIDS Treatment Theory
by John S. James
A laboratory study by Anthony Fauci, M. D., and other
scientists at the U. S. National Institute of Allergy and
Infectious Diseases, and at the Cornell University Medical
College in New York City, has confirmed and extended earlier work
by Dr. Leonard A. Herzenberg and colleagues at Stanford
University suggesting that n-acetylcysteine (NAC) can inhibit
growth of HIV. NAC is used in many European countries to treat
bronchitis; it is not approved for this use in the United States,
but has been available for over a year through buyers' clubs.
For background on this drug, see "NAC: Bronchitis Drug May
Slow AIDS Virus," AIDS TREATMENT NEWS #88, October 6, 1989; also
see issues # 92 and 93. Despite widespread public interest and
some scientific interest in the drug, no U. S. controlled trial
has yet begun; there are rumors of a trial in Europe, but no
results have been published. One monitoring study, in which
persons using NAC kept diaries, was organized by the Fight for
Life Committee, an AIDS activist group in North Lauderdale,
Florida in 1989. Preliminary results, which were positive, were
summarized in AIDS TREATMENT NEWS #92, December 1, 1989.
No laboratory study can prove that a drug is helpful for
people; only clinical trials can do that. But laboratory studies
can suggest which drugs should have priority for trials, and what
effects to look for (and therefore how the trials should be
designed). The recently published laboratory results will
certainly increase interest in NAC- -not as a potential cure or
means to control HIV or AIDS entirely, but as a safe and
available treatment which may be considerably helpful for some
patients.
The New Study
The recent NAC study, by a group headed by Fauci and by
Alton Meister, M. D., of Cornell, was published February 1 in
Proceedings of the National Academy of Sciences, USA (volume 88,
pages 986-990). Here is an overview of how this research was
conducted, and what it found.
The experimenters used a line of cells created in the
laboratory which have HIV as an inherited part of their DNA.
These cells have been used for studies of why HIV is usually
latent for many years, and only later becomes active and causes
serious disease. The researchers used three chemicals which are
known to greatly stimulate HIV activity in these cells: PMA,
tumor necrosis factor, and interleukin 6 (IL-6); two of these,
tumor necrosis factor and IL-6, are normally found in the body
and are known to be markedly increased in persons with AIDS. The
researchers tested NAC (and also two related substances) to see
if they could prevent this stimulation of viral activity caused
by each of the three chemicals. In all three cases, NAC did
prevent most of the stimulation of the virus.
NAC is believed to work primarily by increasing the level of
glutathione in cells. Glutathione is necessary for life; it
helps cells produce energy, and it also helps protect them
against oxidation; in addition, it may be an immune modulator,
necessary for T-cell activation. A German scientist, Dr. Wulf
Droge, at the German Cancer Research Center in Heidelberg, had
found that glutathione levels were deficient in cells of persons
with AIDS, and that the deficiency worsened as the disease
progressed; he was the first to suggest NAC as a potential AIDS
treatment, since it is known to raise glutathione levels.
Dr. Droge's work came to the attention of Doctors Leonard
Herzenberg and Leonore Herzenberg, who are husband and wife and
both members of the Genetics Department at Stanford University.
The Herzenbergs brought NAC as a possible AIDS treatment to the
attention of the U. S. scientific community. In June 1990 their
team published results, in the Proceedings of the National
Academy of Sciences, showing that NAC inhibited HIV replication
in a variety of laboratory tests.
The new study by Fauci, Meister, and others confirmed the
Herzenbergs' results. Also, to make sure that NAC was indeed
working by raising glutathione levels, the researchers ran
similar experiments, using glutathione itself, and also a
glutathione derivative, instead of NAC. All three substances did
inhibit HIV infection -- probably by more than one mechanism.
NAC was found to have an additional antiviral effect which the
other two did not have. These effects, especially the latter,
are not well understood. The research with NAC, as well as its
immediate importance in supporting the need for clinical trials
of this drug, is leading to further insights on how HIV becomes
activated in cells -- understanding which could lead to
treatments designed to keep the virus permanently inactive.
Comment: Practical Consequences
Anecdotal reports suggest that a minority of people who try
NAC feel much better, with benefits such as increased energy and
appetite, but that most do not notice any change. We checked
with buyers' clubs and found that a number of people have
continued to use NAC during the last year, but that the demand
has been limited when no new scientific information and resulting
media coverage has come out.
The following suggestions have come from our conversations
with several people familiar with NAC:
* Persons who try the treatment and feel markedly better
during the first two weeks should definitely continue. In these
cases, NAC may be correcting an abnormally low level of
glutathione within cells.
* If no change is noticed, then it is hard to tell whether
or not the treatment is doing any good. In some people, T-
helper counts have increased, but it may take months to get this
effect. There are suggestions that NAC may help stabilize people
with HIV infection, or may speed recovery from opportunistic
infections, but it is too early to know if there is any real
benefit.
* The best formulations of NAC are generally believed to be
those made in Europe for treating bronchitis. Three different
kinds are available from the PWA Health Group, 212/532-0280; this
buyers' club will fill mail orders. Doses used generally range
from 600 to 1800 mg per day, with those who are more seriously
ill using the higher doses. While glutathione itself is sold in
some health-food stores, one expert we talked to said that it
would not be effective.
U. S. researchers have been trying to start a clinical trial
of NAC for the last two years, but commercial and bureaucratic
obstacles have prevented any such study from starting.
Researchers at the U. S. National Institutes of Health are now
seeking FDA permission to begin a trial.
***** Neuropathy: Answers Emerging?
by Denny Smith
Neuropathy has become a problem for many people with HIV
infection, and can develop for a variety of reasons. Fortunately,
it might be controllable with a number of promising treatments,
many already available for other purposes.
The progression of HIV alone can apparently lead to two
different disorders of the peripheral nervous system. One kind
is a painful sensory dysfunction resulting from the degeneration
of the axon, the component of nerve cells responsible for
conducting impulses. The other, less frequent, neuropathy
results in a motor weakness caused by an inflammatory process
which damages the myelin covering the nerve fibers. This kind
may resemble "myopathy," a discomfort or fatigue of muscle
fibers, which is also identified with HIV or with long-term use
of AZT.
Other possible causes of neuropathy include some
opportunistic infections and tumors, as well as some of the drugs
used in HIV/AIDS therapies (such as ddI, ddC, interferon and
certain chemotherapies). Distinguishing the cause or type of
neuropathy is important for deciding which treatment approach to
take. Discontinuing a medication from which neuropathy has been
known to result may resolve the symptoms completely, especially
if done in a timely manner. But if an infection or medication is
determined not to be the cause, nerve conduction tests may help
with a diagnosis.
Much of the previous medical literature discussing
neuropathy came from experimental approaches for the often
painful neuropathy experienced by people with diabetes. Research
into diabetic neuropathy has suggested a number of possibilities,
and achieved some limited successes.
Among these are a number of treatments already licensed for
other indications: piroxicam, plasmapheresis, calcitonin (nasal
spray), capsaicin, antiarrhythmia drugs like mexiletine and
lidocaine (intravenous), antidepressants such as nimodipine,
imipramine, desipramine or fluoxetine, anticonvulsants like
phenytoin, and narcotics for very painful neuropathy.
Some others, regarded generally as investigational agents,
are coenzyme Q-10, gamma-linolenic acid, prostaglandin E1, and
tolrestat.
We interviewed two physicians familiar with aspects of HIV-
related neuropathy: Ari Ganer, M. D., of the Santa Clara Valley
Medical Center, and Harry Hollander, M. D., at the University of
California San Francisco.
Dr. Hollander told us that, although the rationales for
trying some of these drugs theoretically would apply to HIV as
well as to diabetic neuropathy, their side effects are not
dependably uniform: a treatment reported to be safe in one
situation might not be so in the other. He told us that
antidepressants are usually tried first for symptomatic relief;
if they fail, he follows with an anticonvulsant, noting that the
course of neuropathy and the sequence of drug choices are
variable for every patient.
Dr. Ganer and Dr. Stanley Deresinski are studying mexiletine
to treat HIV-related neuropathy in a controlled clinical trial
sponsored by a community-based research organization, the AIDS
Community Research Consortium (ACRC). This trial is funded by
the American Foundation for AIDS Research (AmFAR), and has two
sites south of San Francisco, both of which are open to more
participants. This study employs the "crossover" design, so that
for the first half of the study, some patients will be given
mexiletine, the others a placebo. After a short "washout"
period, the placebo and active drugs are switched. Neither the
investigators nor participants know when active drug was given
until the study is finished.
Nevertheless, patterns are often apparent in crossover
trials if the treatment is making a difference. Dr. Ganer said
that he is encouraged by preliminary impressions of the study:
some people have obviously experienced significant relief from
the symptoms of neuropathy during part of the trial. The only
measures of response in the study are the patients' reports of
pain or pain relief.
Brian Camp, RN, the clinical coordinator of the Redwood City
site, shared similar impressions, and hopes to see neuropathy
studies expanded in scope and number.
Of the other agents discussed as potential treatments for
HIV-associated neuropathy, Dr. Ganer thinks capsaicin is a good
candidate for clinical trials, alone or in combination with
mexiletine. Two pharmaceutical preparations containing capsaicin
are already marketed for treating the discomfort of herpes zoster
(shingles) lesions. Both are supplied as creams; one of them,
Axsain, contains a 0.075% concentration of capsaicin, and the
other, Zostrix, contains 0.025%. [Note: capsaicin is the
component of hot peppers which makes them hot.]
If the mexiletine trial proves useful, Dr. Ganer hopes to
expand HIV neuropathy trials to test capsaicin, or other agents.
He remarked that surprisingly little attention has been paid to
this common problem. The current trial is recruiting people with
neuropathy resulting from HIV, but future studies will probably
accept people with drug-induced symptoms as well. Persons
interested in this study can contact the Santa Clara Valley
Medical Center site at 408/299-5588, or the Redwood City site at
415/364-6563.
AmFAR has granted the ACRC funding for expanded trials. Of
course, since mexiletine, capsaicin and some of the other
possibilities mentioned above are already available by
prescription, physicians and patients have access to those drugs
now, without enrolling in a trial. Meanwhile, AIDS TREATMENT NEWS
welcomes anecdotal reports of experience with treating neuropathy
from our readers.
References
Parry, GJ, Kozu H. Piroxicam may reduce the rate of progression
of experimental diabetic neuropathy. Neurology, volume 40, number
9, pages 1446-1449, September 1990.
Zieleniewski W. Calcitonin nasal spray for painful diabetic
neuropathy. (letter) The Lancet, volume 336, number 8712, page
449, August 18, 1990.
Boulton AJ, Levin S, Comstock J. A multicentre trial of the
aldose-reductase inhibitor, tolrestat, in patients with
symptomatic diabetic neuropathy. Diabetologia, volume 33, number
7, pages 431-437, July 1990.
Nakamura Y, Takahashi M. Clinical application of prostaglandin on
peripheral neuropathy. Nippon Rinsho, volume 48, number 6, pages
1224-1228, June 1990.
Jamal GA, Carmichael H. The effect of gamma-linolenic acid on
human diabetic peripheral neuropathy: a double- blind placebo-
controlled trial. Diabetic Medicine, volume 7, number 4, pages
319-323, May 1990.
Kastrup J, Petersen P, Dejgard A. Intravenous lidocaine and
cerebral blood flow: impaired microvascular reactivity in
diabetic patients. Journal of Clinical Pharmacology, volume 30,
number 4, pages 318-323, April, 1990.
Egbunike IG, Chaffee BJ. Antidepressants in the management of
chronic pain syndromes. Pharmacotherapy, volume 10, number 4,
pages 262-270, 1990.
Masson EA, Boulton AJ. Aldose reductase inhibitors in the
treatment of diabetic neuropathy. A review of the rational and
clinical evidence. Drugs, volume 39, number 2, pages 190-202,
February, 1990.
Hollander, H. Peripheral neuropathy and HIV infection. AIDSFILE,
volume 3, number 2, page 1, June 1988.
***** Treatment Library: Books and Newsletters
by John S. James
An organization or an individual can set up a basic AIDS
library for relatively little cost. A few reference books,
newsletters, and referral phone numbers are most important as the
core reference materials. After that, there are many directions
in which a library can evolve, and specialization is appropriate,
as few could afford to be comprehensive. This article provides
an annotated list of basic materials, a starting point which will
make an AIDS treatment library immediately useful.
The section on reference books, below, is central; an AIDS
treatment library can provide a core of current information and
make itself useful for under $200. The other lists, of AIDS
newsletters and of "alternative" information sources, include
more optional items, which some libraries will choose not to
carry. We have not included academic medical and scientific
journals in this article; we may publish a list in a future
issue.
The standard medical books can best be found at a bookstore
with a good medical department (in San Francisco, for example, we
usually check the bookstore at the University of California San
Francisco Medical Center, 500 Parnassus Avenue -- or the medical
section of Stacey's Books, 581 Market Street). If no store is
convenient, the books can usually be ordered from the publisher.
For newsletters, we include contact or ordering information.
Reference Books
* Introductory handbook for patients. Early Care for HIV
Disease, by Ronald A. Baker, Ph.D., Jeffrey M. Moulton, Ph.D.,
and John Charles Tighe, 1991, published by the San Francisco AIDS
Foundation, 415/863-2437, or 800/367- 2437 (from Northern
California), $9.95. This 108-page book, released last week, is a
first introduction for persons who have learned that they are HIV
positive. It includes topics such as finding a doctor,
understanding blood tests, nutrition and food safety, drugs
(including AZT, ddI, and ddC, interferon, GM-CSF, and combination
therapies), clinical trials, expanded access, paying for medical
care and obtaining public assistance when necessary, and finding
psychosocial support. An excellent resource list includes phone
numbers for local and national hotlines throughout the United
States, six different Spanish hotlines, a Filipino hotline,
addresses and phone numbers for over two dozen minority AIDS
organizations, and an annotated list of 20 AIDS newsletters and
other publications; an organization with an AIDS library might
want to photocopy this hotline and resource list for easy
reference by library users. The book includes a glossary to
define the medical terms it uses.
* Medical dictionary. Webster's Medical Desk Dictionary,
Merriam-Webster Inc., Springfield, Massachusetts, 1986, $21.95,
is clearly written and accessible to a general audience. If you
want a more technical dictionary, consider Dorland's Illustrated
Medical Dictionary, W. B. Sauders Company, Philadelphia, 1988;
Dorland's is written primarily for physicians.
* Drug book(s). We usually use Nursing91 Drug Handbook,
Springhouse Corporation, Springhouse, Pennsylvania, 1991, $21.95.
It is updated every year, and the information it presents on each
drug is practical and well written. This handbook is organized
by classes of drugs, rather than one alphabetical list, so
patients can learn about other potential treatment options, which
might be necessary if a drug prescribed for them causes side
effects.
Many people use the Physicians' Desk Reference (the "PDR")
as their basic book on approved drugs. The 1991 edition is
available now in bookstores for $49.95. It is thorough and
authoritative, as it contains the official "labeling," what the
FDA allows drug manufacturers to say about each drug. The PDR is
not as convenient to use as the nursing handbook; for example, it
is organized by drug manufacturer, not by type of drug. But the
PDR is more thorough, especially on side effects. A good library
should consider both.
Another option is Handbook of Drugs for Nursing Practice, by
Virginia Karb and others, the C. V. Mosby Company, St. Louis,
1989, $28.95. We would choose this book over the other two
except for the fact that the latest edition now available is two
years old, and AIDS drug information changes rapidly.
* AIDS textbook. We recommend The Medical Management of
AIDS, Second Edition, by Merle A Sande, M. D., and Paul A
Volberding, M. D., W. B. Saunders Company, Philadelphia, 1990,
$45. This book, edited by two professors at the Department of
Medicine of the University of California San Francisco, was
written by dozens of leading AIDS experts. Chapters include
early HIV infection, dermatologic care, oral manifestations of
AIDS, gastrointestinal disease, neurologic complications,
hematologic manifestations, and cardiac, endocrine, and renal
complications. There are also chapters on pneumocystis,
toxoplasmosis, cryptococcal meningitis, fungal infections,
mycobacterial diseases, salmonella and other encapsulated
bacteria, herpes virus infections, and malignancies. Other
sections examine epidemiology, prevention of transmission,
pathogenesis, children with AIDS, and legal issues. Most
chapters have dozens of references. This book is written for
physicians; the general reader will need a medical dictionary to
follow parts of it. Be sure to get the second edition, since the
first was published in 1988 and is now out of date.
* Directory of AIDS treatments. The AIDS/HIV Treatment
Directory is published by the American Foundation for AIDS
Research, 1515 Broadway, Suite 3601, New York, NY 10036-8901,
212/719-0033, updated quarterly, $30 per year. This directory
focuses primarily on experimental treatments now in clinical
trials for HIV, opportunistic infections, malignancies, and other
AIDS-related complications. The entries are continually updated;
sometimes drug information appears in the Directory before it is
published anywhere else. Besides the listings of treatments and
clinical trial sites, editions include other useful information;
for example, the December 1990 issue includes an article on
combination therapies, a list of compassionate use and treatment
IND programs, a list of community-based trial organizations, a
list of U. S. AIDS Clinical Trials Group centers, an index of
drug manufacturers, a glossary, and an extensive list of AIDS
newsletters and other information sources.
* How to get medical benefits. The AIDS Benefits Handbook,
by Thomas P. McCormack, Yale University Press, 1990, is "a brief
encyclopedia of income, health, and housing programs for the
disabled," including information on state-by-state variations.
It explains SSDI, SSI, AZT assistance, Medicaid, General
Assistance, Emergency Assistance, Food Stamps, and others,
including "several programs of real potential for aiding PWAs,
but which are far less well known to the AIDS advocacy community
and therefore not used nearly to their potential: the Hill-
Burton, state or local indigent medical assistance and private
charity programs available in many hospitals; State Supplementary
Payment (SSP) programs to finance PWA group housing in 'board and
care homes'; and state-run drug (and even health insurance)
subsidy programs." [Note: a brief announcement of this book
appeared in AIDS TREATMENT NEWS #105, June 15, 1990.]
Treatment Newsletters
At last count, there were well over 100 periodical
publications devoted solely to AIDS. We cannot evaluate them
all; if we have missed some which you believe should be listed,
please let us know. Note that this list does not include many
specialized newsletters, such as local clinical-trials
directories, or newsletters not primarily about treatment.
The first three listed below often cover some of the same
material as AIDS TREATMENT NEWS, with articles on treatments and
interviews with physicians. Of the four, BETA is probably the
most conservative; AIDS TREATMENT NEWS is usually regarded as
most willing to venture outside of the medical mainstream.
* Treatment Issues, published ten times a year by the Gay
Men's Health Crisis, 129 West 20th St., New York, NY, 10011, $20
suggested donation for a one-year subscription.
* PI Perspectives, published several times a year by Project
Inform, 347 Dolores, Suite 301, San Francisco, CA, 94110.
415/558-9051 from San Francisco and other countries, 800/334-7422
from rest of California, 800/822-7422 from U. S. locations
besides California; $25 suggested donation for information packet
and subscription.
* Bulletin of Experimental Treatments for AIDS (BETA),
published four times a year by the San Francisco AIDS Foundation,
$35 per year. For subscription information call 415/863-AIDS
from San Francisco and other countries, 800/327-9893 from
elsewhere in the United States, 415/861-3397 for information
about bulk orders.
Positive News is another newsletter also published quarterly
by the San Francisco AIDS Foundation. It is free and appears in
four languages: English, Spanish, Tagalog, and Chinese.
Described by the Foundation as "a low- literacy newsletter on
issues affecting people with HIV infection," Positive News
contains little treatment information; it is important because it
provides AIDS information in several languages.
* Notes from the Underground, published six times a year by
the PWA Health Group, 31 West 26th St., 4th Floor, New York, NY,
10010, 212/532-0280, $35 individual, $75 institutions/physicians;
send a self-addressed stamped envelope for a free sample copy.
The January 1991 issue includes articles on azithromycin, a guide
on where to get non-approved drugs, an article on pricing at the
PWA Health Group (which is a non-profit buyers' club), and
important testimony by executive director Derek Hodel to the
Congressionally-mandated AIDS Research Advisory Committee.
* Treatment & Research Forum, published monthly by the
Community Research Initiative, 31 West 26th Street, 3rd floor,
New York, NY 10010, 212/481-1050, donation requested. Includes
information on drugs being studied by the Community Research
Initiative, one of the oldest and largest community-based AIDS
research organizations, and other treatments of interest.
* AIDS Medical Report, published monthly by American Health
Consultants, 67 Peachtree Park Drive, NE, Atlanta, GA, 30309,
800/688-2421, $149 for subscription ($199 with CME credit).
Written for physicians, this newsletter usually has one in-depth,
practical report per issue on standard-of-care treatments.
* Critical Path AIDS Project, published monthly by the AIDS
Library of Philadelphia, 32 N. 3rd St., Philadelphia, PA, 19106.
215/545-2212, $15 or contribution of choice for subscription,
free to people with HIV. Publishes in-depth articles, often
reprinted from elsewhere, on treatments, as well as prevention
and services, including listings of support groups in the
Philadelphia area.
* AIDS Medicines in Development, quarterly survey of most
investigational agents currently in AIDS research, published by
the Pharmaceutical Manufacturers Association, 1100-15th St., NW,
Washington, DC, 20005. No cost; send written request for
subscription.
* Treatment Update, and Traitement Sida, published by AIDS
Action Now!, 517 College Street, Suite 324, Toronto, Ontario,
Canada M6G 1A8. 416/944-1916. Varied subscription prices.
Notes on research and treatment ideas.
* STEP Perspective, published by the Seattle Treatment
Education Project, 1535-11th Ave, Suite 203, Seattle, WA, 98122.
206/329-4857. $15 or more suggested contribution for
subscription. Well researched articles on treatment studies.
* Washington HIV News, Box 3933, Merrifield, VA 22116-3933,
202/797-3590. Published in cooperation with the Whitman-Walker
Clinic, Washington HIV News includes medical news and education,
and information about new treatments, especially those in
clinical trials. Subscriptions (four issues) are free for persons
with AIDS, otherwise $8 individual rate, $80 institutional rate.
Phone or write for free sample issue.
* ATIN: AIDS Targeted Information Newsletter, sponsored by
the American Foundation for AIDS Research, published monthly by
Williams and Wilkins, P. O. Box 23291, Baltimore, MD 21203-9990,
800/638-6423 (in Maryland call 800/638-4007), $125 per year
individual, $275 institution. This review of the medical and
scientific literature on AIDS has several hundred citations in
each issue, with brief reviews, sometimes quite technical, of the
most important articles.
* The treatment committees of at least three ACT UPs now
publish newsletters. Some articles report on treatments, others
discuss business, such as meetings with pharmaceutical companies
or government agencies. Because these groups are in the forefront
of treatment activism, the newsletters include information not
otherwise available. For more information, call the numbers
below:
* ACT UP/New York Treatment and Data Committee: The
Treatment and Data Digest. Call Mike Barr at 212/982- 8206, or
Chris DeBlasio at 212/420-8432.
* ACT UP/Los Angeles Treatment and Data Committee: Treatment
Issues Report. Call Wade at 213/841-2631, or the ACT UP office
at 213/669-7301.
* ACT UP/Golden Gate Treatment Issues Committee: Treatment
Issues Report. Call the ACT UP office at 415/252-9200, or
Michael Wright at 415/864-6305.
Alternative (Complementary) Treatment Information
It is hard to judge information about potential treatments
which are in some way outside of the medical mainstream. Some
guidelines can be given, however:
* Even for non-mainstream treatments, there is almost always
some background information published in credible medical or
scientific journals; if there were not, the proposed treatment
would clearly not be ready for use except by qualified research
institutions. (Persons should be aware, however, that
unscrupulous promoters sometimes provide impressive-looking but
irrelevant references, knowing that most people will not follow
up and discover that the cited articles do not support the claims
the promoter is making.)
* Besides the medical literature, the background and motives
of those interested in the treatment can be considered. Is the
information about it coming from a nonprofit or community-based
AIDS organization, or from a promoter with a scheme to make
money?
* Particular danger signs are secret remedies, or any
attempt to keep patients from obtaining standard medical care, or
from discussing all treatments they plan to use with their
physicians. Quacks often try to cut their victims off from other
information sources, to increase their own control.
Patients should tell their physicians about all treatments
they are considering; both parties should seek to build
relationships where this is possible. Physicians are busy; few
have time to follow the latest research on everything their
patients may be interested in, and some are threatened when
patients ask questions they cannot answer. Still, complementary
treatments should be discussed, in case there is important
information, especially precautions or other safety concerns,
which may apply particularly to the individual patient because of
his or her health status, or because of drugs the physician has
prescribed. [Note: We prefer the term "complementary" to
"alternative," to emphasize that any unproven treatment
possibilities should be used in addition to good-quality standard
medical care, not instead of it. Also note: for more
information on the physician-patient relationship, see "Managing
Your Doctor," by Michelle Roland, AIDS TREATMENT NEWS #111,
September 21, 1990.]
Disclaimer: we have listed the following information
sources as a starting point for a complementary- treatment
section of an AIDS library. But we cannot be as confident about
non-standard treatment information as we can be about standard
medical information, such as that found in medical dictionaries
or in drug handbooks. While we believe that the following sources
are usually correct in summarizing information from the medical
and scientific literature, we could not check everything; in
addition, some of the writers have strong viewpoints or
preconceptions which need to be taken into account. We urge
readers not to rely on any single source as authoritative, but to
follow up by seeing additional information about any treatment
options which interest them.
This list is not complete; there are many useful
publications not included here. Some entire areas are omitted --
Chinese medicine, for example -- not because we dismiss them, but
because we are not prepared to cover them well.
The items listed below are extremely diverse. We cannot
vouch for all of the information they contain. We have listed
each item because we believe that some of our readers will want
to know about it.
The books may be available in AIDS sections of gay or
medical bookstores. For newsletters, and sometimes also for
books, we include mailing addresses and telephone numbers.
* Surviving AIDS, by Michael Callen, Harper Collins
Publishers, 1990. This is not primarily a book about treatments,
but rather is based on interviews with long-term survivors. The
author, one of the founders of both the People with AIDS
Coalition and the Community Research Initiative in New York, was
diagnosed with AIDS in 1982 (before the term "AIDS" existed), and
given a short time to live; he is still alive and active today,
over eight years later. Aside from the interviews, other
chapters include "Why Some Survive," "The Propaganda of
Hopelessness," "Making Sense of Survival" (summarizing what he
learned from his continuing study of survivors), "What I Would Do
If I Were You," and "The Case Against AZT."
* Living with the AIDS Virus, by Parris M. Kidd, Ph.D., and
Wolfgang Huber, Ph.D., 1990, HK Biomedical, Inc -- Educational
Division, P. O. Box 8207, Berkeley, CA 94707, phone 415/527-6871.
This 182-page book provides an easy-to-read overview of most of
the better-known complementary and experimental treatments.
While there are chapters on AZT and the biology of HIV, the main
emphasis is on nutritional approaches, especially egg lecithin
lipids (i.e., AL-721) and "natural" antioxidants, reflecting Dr.
Kidd's background as a consultant on nutritional supplements.
* HEAL (Health Education AIDS Liaison) is preparing an
updated version of its AIDS Information Packet on Alternative &
Holistic Therapies for AIDS. We have not seen this packet, which
should be available in about three weeks; the previous version
was 150 pages. HEAL requests a donation of $12.50 or more for
the packet, but will send it without charge to anyone who cannot
afford to donate. HEAL, a nonprofit organization, holds
treatment meetings in New York; it also plans to publish a
quarterly newsletter. For more information, send a self-
addressed stamped envelope to: HEAL, P. O. Box 1103, Old Chelsea
Station, New York, NY 10113, or call 212/674- HOPE.
* Nutritional Influences on Illness, Melvyn R. Werbach, M.
D., 1988, 1990, Keats Publishing, Inc., New Canaan, Connecticut,
203/966-8721, $17.95 (paperback). This 504-page book by an
assistant professor at the University of California Los Angeles
School of Medicine is not about AIDS -- which does not even
appear in the index. Instead, the book has chapters on 92
different diseases, each one reviewing the medical and scientific
literature suggesting that certain foods or nutrients may be
helpful (or in some cases harmful) in its treatment. While few of
the conditions covered are AIDS related, persons with AIDS or HIV
might find ideas worth trying.
* Smart Drugs and Nutrients, by Ward Dean, M. D., and John
Morgenthaler, 1990, B&J Publications, Santa Cruz, CA 800/669-
2030. This book, released in January 1991, is subtitled "How to
Improve Your Memory and Increase Your Intelligence Using the
Latest Discoveries in Neuroscience." It is not about AIDS;
instead it reviews scientific studies of several dozen drugs
which some researchers believe may improve mental functioning.
Drugs are regularly prescribed for this purpose in some
countries, but in the U. S. the concept has so far not been
accepted. We mention the book here for research interest,
because of the possibility that some of the drugs might be
helpful in treating AIDS-related neurological problems. As far as
we know, however, no studies to test this possibility have ever
been done.
A two-part article on cognition-enhancement drugs is also
being published by Megabrain Report: The Psychotechnology
Newsletter, P. O. Box 2744, Sausalito, CA 94965.
* Forefront Health Investigations, published six times a
year by MegaHealth Society, P. O. Box 60637, Palo Alto, CA 94306,
408/733-2010. Originally called Journal of the MegaHealth
Society and focusing on "health information on life extension and
biological technology," Forefront recently changed its name and
has begun to include more information on AIDS and HIV; for
example, the December 1990 issue includes an article on anabolic
steroids as a proposed treatment for wasting syndrome, and an
article on yeast infections (not AIDS-related, but possibly
useful with AIDS). The previous issue discussed combining AZT
with ddC or with ddI.
***** Announcements
** San Francisco: Forum on Women and HIV
The AIDS Health Project is sponsoring a public forum on
women living with HIV, to be held Wednesday, February 27, 1991,
from 7-9 p.m., at 1855 Folsom Street, Room 125. The forum will
feature panel discussions and workshops on the gynecological
manifestations of HIV, treatments and therapies, and clinical
trials relevant to women. The forum is free, and sign
interpretation is available. For more information, call
415/476-3902.
** Project Inform Expands Treatment Hotline Hours
Project Inform has expanded the hours of operation of its
national HIV treatment information hotline, which will now be
available Monday through Friday, 10 a.m. - 4 p.m., and Saturday,
10 a.m. - 1 p.m., (Pacific Time). The hotline is staffed by
trained volunteers who can provide accurate, up-to-date
information on specific treatments and treatment strategies for
all stages of HIV infection, including early intervention.
The hotline numbers are: 800/822-7422 (U. S. outside
California), 800/334-7422 (California), or 415/558-9051 (San
Francisco, or international).
** San Francisco: Chinese Herbal Program Beginning
The Immune Enhancement Program has designed a new 12-week
program for researching the immune enhancing and antiviral
potential of selected Chinese herbal therapies. The program will
begin March 6, and costs $190, which includes monthly
acupuncture, and support groups.
To register or to ask for more information, interested
persons can call 415/252-8711.
** Correction: ATIN phone number
Issue #120 of AIDS TREATMENT NEWS included an erroneous
toll-free phone number for AIDS Targeted Information Newsletter
(ATIN), for calling from all states except Maryland. The correct
number is 800/638-6423.
***** 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.
***** How to Subscribe to AIDS TREATMENT NEWS by mail
Send $100 per year for 24 issues ($100 for nonprofit
organizations, $200 for businesses and institutions), or $40
reduced rate for persons with AIDS or related conditions who
cannot afford the regular rate, to: ATN Publications, P. O. Box
411256, San Francisco, CA 94141. A six-month subscription (12
issues) is $55 for individuals or nonprofits, $110 for businesses
and institutions, or $20 reduced rate. For subscription
information and a sample issue, call 800/TREAT-12 (800/873-2812),
or 415/255- 0588.
To order back issues, send $18 for issues #1 through #75,
plus the per-issue cost for each later issue you need. The per-
issue cost is $1 reduced rate, $2 individual or nonprofit rate,
and $4 for businesses and institutions (Note that issues 1
through 75 are also available through bookstores, at a retail
price of $12.95.) The back issues include articles on ddI,
compound Q, clarithromycin, azithromycin, fluconazole, AZT,
aerosol pentamidine, ganciclovir (DHPG), diclazuril, DHEA,
peptide T, passive immunotherapy, hypericin, and many other
treatments.
Outside North America, add $20 per year for airmail postage,
$6 airmail for back issues #1 through #75, and $.50 for each
additional issue. Outside U. S. A., send U. S. funds by
international postal money order, or by travelers checks, or by
drafts or checks on U. S. banks.
To protect your privacy, we mail first class without
mentioning AIDS on the envelope, and we keep our subscriber list
confidential.
Copyright 1991 by John S. James. Permission granted for
non-commercial reproduction, provided that our address and phone
number are included if more than short quotations are used.
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