ddodell@stjhmc.fidonet.org (David Dodell) (10/02/90)
AIDS TREATMENT NEWS Issue #111, September 21, 1990
phone 415/255-0588
Vitamin C: Laboratory Tests Indicate Antiviral Effect
Cryptosporidiosis: Guarded Progress
Managing Your Doctor
CARE Act Funding Threatened; Lobbying Help Needed
National AIDS Treatment Activist Conference -- Washington, DC,
November 10-11
Women Denied AIDS Benefits -- Washington, DC, Protest
October 2
National Health Care Day, October 3
San Francisco: Clinical Trials Conference, Saturday, October 6
RISE Health-Education Workshops Begin September 27
VITAMIN C: LABORATORY TESTS INDICATE ANTIVIRAL EFFECT
by John S. James
A series of laboratory tests at the Linus Pauling Institute
of Science and Medicine in Palo Alto, California found that
ascorbate (vitamin C) reduced the growth of HIV in cultured
human lymphocytes, in concentrations not harmful to the cells.
The experimental study, conducted by Steve Harakeh, Ph.D., and
Raxit J. Jariwalla, Ph.D., appears in the September issue of the
Proceedings of the National Academy of Sciences, USA; results
were also presented September 11 at "Ascorbic Acid: Biological
Functions and Relation to Cancer," an international symposium
sponsored by the U.S. National Cancer Institute, and National
Institute of Diabetes and Digestive and Kidney Diseases, in
Bethesda, Maryland. The study is extensive and hard to
summarize, but it showed a substantial reduction in measures
of viral activity (p24, reverse transcriptase, and syncytia
formation) without toxicity to cells at concentrations of 25 to
150 mcg/ml, with the higher concentrations working better.
How much vitamin C would be needed to reach these levels in
blood serum? This study did not measure blood levels, but the
published paper cited measurements by others. One researcher
found an average blood level of 28.91 mcg/ml after oral use of
10 grams of vitamin C. Another found that intravenous infusion
of 50 grams a day led to a peak plasma level of 796 mcg/ml.
Comment
This research appears to have been carefully done; many
measurements were made and the results all point in the same
direction. We raised several questions, however, and gave Dr.
Jariwalla a chance to respond.
One potential limitation is that this study used cultured
cells and viruses, which have been bred in laboratories; recently
scientists have learned that viruses and cells freshly obtained
from patients can give different, and presumably more reliable,
results in drug screening. In our interview, Dr. Jariwalla noted
that at this time there is no evidence that strains differ in
resistance to ascorbate -- but that different strains have not yet
been tested.
One question about the usefulness of vitamin C concerns
the relatively narrow range between effective and toxic doses
found in this study. Effectiveness began to be seen at 25
mcg/ml, but toxicity was found at 400 and above; half or more
of the cells were killed by exposure to 400 mcg/ml or greater
for four days. The therapeutic range is therefore fairly narrow;
for some drugs, the corresponding ratio between effective and
toxic doses is a thousand or more, compared to 16 (400 divided
by 25) in this laboratory test of vitamin C.
Dr. Jariwalla said that "although this may be so, there is
no evidence of ascorbate toxicity found in human beings when
large doses have been taken. The only side effect of high doses
of ascorbate is a mild laxative effect. There are no reliable
reports of severe ascorbate toxicity, such as acidosis or kidney
stones."
Several years ago there was much interest in high-dose
vitamin C as an AIDS treatment. By the end of 1987 this interest
had greatly diminished, although some people continue to use the
treatment today. One reason we have been skeptical of vitamin
C is that if the treatment had worked well, it seems unlikely
that the community would have stopped using it.
Dr. Jariwalla said that interest in vitamin C as a
potential AIDS treatment had diminished for several reasons.
fFirst, the emphasis shifted to AZT and other nucleoside analogs as
antivirals. Second, no clinical trials of vitamin C and AIDS got off
the ground. And third, no hard scientific evidence of the effect
of ascorbate on the AIDS virus was available until now.
At least two clinical trials were proposed years ago by
leading AIDS researchers, but no funding was available. The Linus
Pauling Institute, which has long been interested in vitamin C,
has heard "a number of reports...from AIDS patients who had
taken high doses of vitamin C and had experienced a marked
improvement in their condition" (quote from a press release
accompanying the recently published article). It is possible that
results today could be better than those of several years ago,
when treatment was only used late in the illness. Today,
treatments are started earlier; and AZT and others antivirals
make possible combination therapies, which were not available
during the time of great interest in vitamin C. The article
suggests a rationale for such combinations.
We asked Dr. Jariwalla what the study suggested about an
appropriate dose of vitamin C. He said other results indicate
that at least 10 grams orally would be needed to obtain the
minimum blood levels for antiviral effect. Higher doses can be
obtained through intravenous infusion, to reach plasma levels in
the range found most effective in the laboratory tests. He
cautioned, however, that further clinical studies are required to
establish the optimum method of administration for
maintaining high levels of ascorbate in the blood.
Note: large doses of vitamin C are usually taken as a powder,
not as pills. We asked about the different forms of the vitamin
which are available. The Linus Pauling Institute sent us an
information sheet which said that "Vitamin C, from Bronson
Pharmaceuticals, La Canada, California, is available in the form
of ascorbic acid, sodium ascorbate, calcium ascorbate, or sodium
ascorbate and ascorbic acid combination." The sodium or
calcium ascorbate salts are used to reduce slight acidity in the
urine due to ascorbic acid. Dr. Jariwalla said that for oral use of
high doses, the mixture of sodium ascorbate and ascorbic acid
should be used -- or calcium ascorbate for persons on a sodium-
restricted diet.
We suggest that patients discuss vitamin C, or any treatment
they are considering, with their physician. A nutritionist told us
that some patients have sought treatment for diarrhea, not
realizing that it was caused by taking too much vitamin C; until
they told their physician that they were using the vitamin, the
actual cause of the diarrhea was not suspected. Persons should
also realize that suddenly stopping high doses of vitamin C can
cause deficiency symptoms, as the body is used to the large
amounts and temporarily unable to use the small amounts in
the normal diet efficiently.
We also called Bonnie Broderick, R.D., M.P.H., who is HIV
nutritionist for the early intervention project of the Santa Clara
(California) Department of Public Health. She was concerned
that large doses of vitamin C could interact with other nutrients,
especially vitamin B12 and copper, possibly causing deficiency
symptoms of those nutrients. She also referred us to a chart in
Nutrition Action Healthletter, October 1987, which listed
possible adverse effects of high doses of vitamin C; the chart is
based on a book, The Right Dose: How to Take Vitamins and
Minerals Safely, by Patricia Hausman, M.S., published by Rodale
Press, Emmaus, Pennsylvania, 1987. Because of the possibility
of adverse effects, she is not recommending high-dose vitamin C
until clinical trials have shown an antiviral effect or other
benefit in people.
We asked Dr. Jariwalla what he thought would be the next step
in organizing studies. (Financing, of course, is a major
requirement; the Linus Pauling Institute study was funded by
private donations, and by the Japan Shipbuilding Industry
Foundation; research grants will be sought for further studies.)
Dr. Jariwalla replied that two main avenues are being explored.
First, the Linus Pauling Institute is inviting researchers at
hospitals, clinics, community-based organizations, etc., to start
clinical studies. The Institute itself does not do clinical trials, but
can collaborate with others who initiate them. And second, the
Linus Pauling Institute has urged the National Institute of
Allergy and Infectious Diseases to undertake clinical studies. Dr.
Jariwalla said that "the new evidence provides a strong
scientific basis to conduct clinical trials of vitamin C in AIDS."
References
(1) Harakeh S, Jariwalla RJ, and Pauling L. Suppression of
human immunodeficiency virus replication by ascorbate in
chronically and acutely infected cells. Proceedings of the
National Academy of Sciences, USA. September 1990; volume
87, pages 7245-7249.
CRYPTOSPORIDIOSIS: GUARDED PROGRESS
by Denny Smith
Some quiet developments may be breaking the miasma of
research to find an effective treatment for Cryptosporidium
parvum infection, which causes severe diarrhea. For
background reports on various antibiotics and other approaches,
see AIDS TREATMENT NEWS #95 and #107. Following is
additional information on some of the drugs discussed in those
articles.
Diclazuril, Related Developments
Diclazuril is a veterinary drug used to treat parasites in
chickens, and over a year ago was found to help some people
with cryptosporidiosis. Contrary to what we implied in our
previous articles, diclazuril is not marketed to U.S.
veterinarians, although a number of people have acquired
personal supplies from other countries.
A version redesigned by the manufacturer, Janssen
Pharmaceutica, for human use was tested in recent clinical trials
in New York. Rosemary Soave, M.D., reported the results thus
far at the Sixth International Conference on AIDS in June. She
tested daily doses from 200 mg to 600 mg, and saw the best
responses at the higher doses.
Even though cryptosporidiosis is usually not a problem
outside the gastrointestinal tract, Dr. Soave said that those
people who experienced the best response to diclazuril also
showed higher levels of the drug in their bloodstream. So
Janssen is again reformulating diclazuril to improve
absorbability. Trials of the improved compounds are planned,
but details have not been released. Meanwhile, Janssen has
applied to the Food and Drug Administration for permission to
provide compassionate use access to diclazuril.
On a speculative note, a pharmacist told us that a close
chemical relative of diclazuril, called toltrazuril, is also used
for treating parasites in animals. Toltrazuril, a product of
Bayer (under the trade name Baycox), is a broad-spectrum
anti-protozoal used to treat sheep, poultry, and fish. Like
diclazuril (trade name Clinicox), it is marketed in some Latin
American countries for veterinary use. We were told that in
animal studies, toltrazuril was as safe as diclazuril, and that
it is formulated in a liquid more concentrated than the
diclazuril powder mixed with poultry feed. However, we know of
no human experience with toltrazuril nor of any laboratory data
testing it against Cryptosporidium. A veterinarian friend of
ours is looking further into toltrazuril, as well as other
veterinary drugs which might be able to treat infections in
humans.
Humatin Success?
One of the studies of cryptosporidiosis presented at the
Sixth International Conference was a hospital chart review of
patients treated with the common anti-parasite drug paromomycin
(brand name Humatin); the study found good results (see AIDS
TREATMENT NEWS #107, July 20, 1990, page 5). Surprised that
an ordinary, available medicine was found useful after years of
research into numerous possibilities, we contacted the author of
the abstract, Joseph Gathe, M.D., at Park Plaza Hospital in
Houston. Dr. Gathe said that he continues to see very good
responses to paromomycin in about 90% of his patients with
cryptosporidiosis. The improvements include a substantial
decrease in the quantity and frequency of diarrhea, and often a
decrease in stool counts of the parasite's cysts.
This drug is an intraluminal agent, which means it passes
through the gastrointestinal tract with little absorption into the
bloodstream. Dr. Gathe explained that this characteristic is an
advantage for controlling toxicity (none was seen in his
patients), but would make the drug useless for treating
infections which have disseminated to other body systems.
However, drug handbooks caution that if this drug should reach
the bloodstream, such as through intestinal ulcers or blockage, it
could lead to hearing loss or kidney toxicity or other side effects
attributed to large or extended doses of aminoglycoside
antibiotics.
We consulted three other physicians who have tried
paromomycin in the past to treat cryptosporidiosis: two of them
had not seen any response. One of the two pointed out that
chart reviews can be unreliable methods of drawing conclusions
about a treatment because they analyze data retrospectively,
without control over variables which a prospective clinical
study would eliminate or at least manage.
The third was Paula Sparti, M.D., a respected HIV physician
in Miami. She has tried paromomycin with her patients diagnosed
with cryptosporidiosis, sometimes without any results. But one
of her patients responded dramatically within 36 hours after
starting paromomycin, at 500 mg given four times daily. His
profuse diarrhea completely cleared, and related abdominal
pain subsided. Shortly after, a patient treated by an associate of
Dr. Sparti's responded similarly to the drug.
Dr. Sparti's assessment is that some people, not all, may
benefit from paromomycin. She feels that since it is available
and safe, people with cryptosporidiosis should be offered a trial.
If there is no improvement within 7 to 10 days, the drug can be
discontinued.
It is possible that some of the differences in response to
the drug may result from the difficulty in diagnosing intestinal
infections. In the search for a cause of diarrhea or
malabsorption, several organisms capable of causing illness
might be identified in stool specimens. Other microbes may not
be readily found in the specimens, yet be present and causing
problems in the intestinal tract. Given these uncertainties, the
treatment for diarrhea and resulting weight loss can be hit and
miss. If symptoms begin to clear up during the administration
of a given drug, such as paromomycin, it might not always be
possible to know which organism the drug acted upon, if any.
Macrolide Antibiotics?
Two other drugs tried so far to treat this infection are
spiramycin and clindamycin; there have been positive, but
limited, results. Clindamycin is already approved to treat
certain infections; spiramycin is an investigational macrolide
antibiotic, available through compassionate use. A related drug
called azithromycin, approved in Yugoslavia, has strong
laboratory activity against another protozoal infection,
toxoplasmosis. Human trials to test azithromycin against
toxoplasmosis are long overdue. A pilot study testing the drug
in MAI infections is already in progress. The manufacturer,
Pfizer, Inc., is now working toward FDA approval as a treatment
for certain respiratory infections and chlamydia. We have heard
that some buyer's clubs are investigating how to increase access
to azithromycin in this country.
Given azithromycin's broad potential, we wondered about
trying it for cryptosporidial infections. We spoke to Shelley
Gordon, M.D., an infectious disease specialist in San Francisco
who usually tries clindamycin with primaquine to treat
cryptosporidiosis, with some success. She noted that her
patients with higher helper cells tend to have the best results.
We asked her about the logic of trying azithromycin, and she
agreed that it is worth considering. A spokesperson for Pfizer
told us that they were not aware of any studies suggesting that
azithromycin has activity against Cryptosporidium.
The safety and availability of paromomycin suggest that it
is worth trying for cryptosporidiosis. Diclazuril and its future
analogs appear promising, and speedy development could spare
many people from resorting to veterinary versions.
Azithromycin is a speculative possibility, but it warrants
research attention. These drugs, like clindamycin, spiramycin,
and hyperimmune milk, may work for some people some of the
time. Until one is proven consistently effective, we support
aggressive experiments with the reasonable choices at hand.
Managing Your Doctor
by Michelle Roland
Introduction
Many patients find themselves dissatisfied with one or more
aspects of their relationships with their health care providers.
For some, the problem is the amount of time and attention they
receive during office appointments or in-patient hospital visits;
for other, philosophical differences in treatment approaches
leave them feeling misunderstood or unsupported in their
decision-making process. Still others find their symptoms
undiagnosed and/or untreated for long periods of time.
In this article, we will present some suggestions about how
to develop a constructive working relationship between patients
and their physicians. In order to do this, we will attempt to
explain how doctors are trained to think and how you, as a
patient, can assist them in their thought process while having
your questions answered to your satisfaction.
What Kind of Patient Are You?
The first step in developing a good relationship with your
doctor is to identify the role you wish to play in this
relationship. The next step is to find a doctor who feels
comfortable working with patients in this way. In order to find
such a doctor, you must know what you are looking for.
Many people with HIV infection want to work as full
partners with their doctors in managing their health. For such
people, frank discussions of diagnostic and treatment
possibilities are very important. Others would rather have the
doctor do most of the thinking about what could be causing the
symptoms and how to treat them without being included in this
thought process. They would rather play a more passive role and
accept the doctor's suggestions without a great deal of
interaction.
This distinction is most often not quite as clear cut as it
may sound. Many people fall somewhere in the middle, wanting to
be included in the decision-making process, but not really
wanting to know all of the details along the way. For these
patients, brief explanations about what the doctor is looking for
will suffice, followed with a more in-depth discussion of
treatment options once a diagnosis has been made.
Determining which role you want to play does not mean that
you need to be bound to that role irreversibly. There will be
times when you want to know more or less than usual; the
challenge will be in identifying those times and being able to
communicate your needs to your doctor as they change. Most
people, no matter how large a part they want to play in
managing their health care, will at times find this role, and the
information that comes with it, very scary and threatening. The
emotional impact of such information should never be
minimized, no matter how active you are in your health care.
Finding the Right Doctor for You
In addition to determining how active you want to be in
your health care relationship, you need to decide the general
philosophical approach you think you will want to take in terms
of treatments. Some people feel most comfortable following the
standard of care in the medical community. At this time, that
would include such suggestions as starting AZT when your T-
helper cell count has fallen below 500, and prophylaxis for
pneumocystis pneumonia if the count falls below 200. Most
often, the standard of care includes FDA approved drugs or
treatments for which there is much data supporting safety and
effectiveness.
Other people want to try new treatment approaches which
have not yet been proven to be effective. Some recent examples
of drugs which fall into this category include compound Q and
oral alpha interferon. Some patients want to try new drugs in
the context of a clinical trial; others prefer to use them with
only their physicians' monitoring and advice. Finding a doctor
who is already participating in clinical trials or who is willing
to refer you to local trials will be important for patients who
want to access potentially effective new treatments in this way.
Finding a doctor who is willing to either provide you with
largely untested compounds, or monitor you if you get them
through another source, will be important if you want to try this
approach. Not all doctors feel comfortable participating in the
use of unproven drugs with their patients. It is a good idea to
determine your doctor's willingness to monitor and support you
in this area if you think you may want to try such a drug now
or in the future.
Many people may want to add non-traditional (in the Western
medical model) approaches like acupuncture, Chinese herbs,
homeopathy, relaxation/visualization, vitamin therapy, etc., to
their health care program. Finding a doctor who is supportive of
your total health care approach is important in this case. If you
want to use both unproven drugs and adjunctive therapies, you
should find out how your doctor feels about each of these
concepts.
Once you have determined the elements you are looking for in
a doctor, you will have to talk about these issues with your
current doctor or any new doctor you may be considering. You
do have a right to have these conversations with your doctor.
Realize, however, that your doctor may not be used to having
this kind of discussion with his or her patients. Before launching
into the details of the discussion, your doctor might be more
open if you tell him or her that you want to talk about
philosophy and style and arrange a time to have this discussion;
this approach will allow the doctor to schedule the necessary
time and prepare to switch gears from the purely medical
issues with which she or he may be more comfortable to a frank
discussion of partnership.
[Note that this article assumes that the patient has a high
degree of privilege and accessibility to a variety of doctors from
which to choose. The unfortunate reality is that in many of the
public health and HMO systems, and in many geographical
locations, the patient's ability to choose doctors is very limited.
In such cases some of the later suggestions in this article may
still be useful, although more difficult to implement.]
Time
There almost never seems to be enough time in any health
care setting, whether private, clinic, HMO (Health Maintenance
Organization), or public hospital, although some of these settings
are certainly worse than others. This problem will probably
never be solved, but it may be helpful to think about a few of
the reasons that time always seems unnecessarily limited.
In some settings, for example, many HMOs, the doctor
essentially has no control over the length of each appointment.
You will often find yourself waiting for long periods of time, and
feeling very frustrated. Keep in mind, however, that you are
most likely waiting because the doctor spent more than the
allotted time with other patients. The doctor in this situation is
constantly battling conflicting needs: the need to stay on
schedule so you don't have to wait too long and the need to
spend "extra" time with patients who need medical or emotional
attention.
A simple solution may seem to be to schedule fewer patients
each day. While it is certainly true that some physicians have
large practices for financial reasons, more often the physician is
again confronted with conflicting needs: to take patients who
need a doctor (good HIV doctors are in high demand), to see
patients on short notice (how often do you feel frustrated by
having to wait days or weeks for an appointment?), and to
schedule sufficient time with each patient. In this difficult
equation, appointment time is often the loser.
In spite of this pessimistic assessment of time, some physicians
and offices are better than others about staying on schedule and
spending sufficient time with each patient for the patient to feel
that his or her needs are being met. When possible, talking to
other patients who see a particular doctor is probably the best
way to determine how much of a problem scheduling will be.
A final comment on time: Often, a fair amount of time is spent
thinking about each patient when the patient is not there. A
responsible doctor reviews the chart before going in to see the
patient, to refresh his or her memory about that patient's
history, and then spends some time thinking about what the
symptoms mean and how to approach them when they write
the chart note after the patient leaves. This fact may not make
you feel any better cared for when the doctor seems to be
rushed and not giving you the attention you want and need, but
it's good to keep it in mind when you are assessing the care you
are receiving. Is the care good, even if you don't feel like you
are getting enough time? If so, the doctor is probably doing a
good job "behind your back." If not, you may need to talk to
your doctor about the time issue and other reasons you may not
be getting the care you need.
How Do Doctors Think?
Doctors are trained to think in four main steps. Understanding
this thought process can help you learn how to ask questions in
a way that will help your doctor think better and provide you
with answers to your questions.
First, the doctor takes a history, or asks questions about your
current complaint and pertinent aspects of your past medical
history. At this time, the doctor tends not to examine you, but
rather just to talk. This may seem a little awkward, as you may
want to show the doctor what it is you are describing. He or she
will probably ask you to show where your discomfort is, but
will not focus on the physical exam until after asking you as
many questions as he or she can think of.
This may be an area where people feel cut short or ignored. The
doctor is again working with conflicting needs: the need to listen
to you and let you talk and the need to keep on schedule. You
can help by trying to answer the doctor's questions completely
but to the point, and the doctor can help by being attentive to
you. Doctors are told all throughout their training that the
majority of information they need to make a diagnosis will
come from the history, so they should listen well.
You can also help in this area by reminding the doctor of
important facts of which they may have lost track, like weight
loss over an extended period of time, recent and past
medication changes, adverse reactions to medications, visits to
other doctors, recent lab tests or x-rays that have been ordered,
etc.
Next, the doctor does a physical exam based on the information
from the history. Again, this may seem awkward, because the
doctor's thought process has shifted; he or she may not want to
talk much while examining you. Some doctors will be able to
put you more at ease during the physical by keeping up the
conversation. Others may concentrate intently on the exam.
Once the doctor has collected the data from the history and
physical, he or she makes an assessment, which should take the
form of a differential diagnosis. This is the stage where he or
she considers all the possible causes for your symptoms and
physical signs found during the physical exam.
Finally, the doctor decides on a plan to determine which of the
possible diagnoses is the correct one and how you should be
treated.
You can play a crucial role in the last two stages: trying to figure
out what is causing the problem and deciding how to treat the
problem. This is the thinking that the doctor usually does in his
or her own head, or while writing in your chart. If you want to
be involved in the process, these are the kinds of questions you
can ask: What are the possible diagnoses you are considering to
explain my symptoms and physical findings? What makes you
consider each of these possibilities? Is there anything else we
should be considering? How will we figure out which of these
possible diagnoses is the correct one? What tests should we
run? How invasive is each test? How expensive? How accurate?
Are there some tests we should run more than once (stool
samples for ova and parasites, for example)? What are the risks
and benefits of each test? In what order should we do these
tests? What treatments should I consider at each stage -- before
we have a diagnosis, and after we have it figured out?
The most important thing you can do to help your doctor
think through the problem and to help you feel assured that you
are getting the best possible care is to map out a plan with the
doctor. What will you do first? If you cannot make a diagnosis
after doing that, then what will you do? Then what? Then
what? You can go through the same process with treatment
possibilities once a diagnosis has been made. What are my
treatment options? If I try this and it doesn't work, or the side
effects are too bad, then what could I try? Then what? Are
there any other medications I can take with the treatment that
might make the side effects more tolerable? What side effects
should I expect?
Following Up
Chances are that you will still have questions when you leave
the doctor's office or later as you think about all the information
you have received. Write your questions and concerns down
and bring them with you to your next appointment.
Working with an assertive patient can be threatening to even
the most enlightened doctor. To soften the "threat," try to
validate your doctor and to take his or her needs into
consideration. Find something you like about what the doctor is
doing before you jump into all your questions and concerns. Tell
him or her that you'd like to talk about several issues and that
you are aware there may not be time to cover all of them
during this appointment. Ask how much time you do have, and
if you can schedule another appointment soon to discuss the
issues which are not highest priority. Make sure you know what
your priorities are so you can have as many of your needs met
as possible during each appointment.
Finally, ask yourself what questions you always seem to have
after an appointment. What consistently frustrates you? Try to
take those questions and frustrations and figure out how to talk
to your doctor about them so that you can decide together how
best to take care of all the parts of you.
CARE ACT FUNDING THREAT; LOBBYING HELP NEEDED
The Comprehensive AIDS Resource Emergency (CARE) Act of
1990, passed by large majorities in Congress and recently
signed into law by President Bush, provides $780 million in
emergency impact aid to cities and states heavily affected by
the epidemic. But while this bill authorizes the expenditure, the
money must also be appropriated in a separate legislative
process. On September 12, the Senate Appropriations
Subcommittee of Labor, HHS and Education approved a budget
plan funding only $110 million of the $780 million authorized --
essentially continuing funding for AZT, but starting no new
programs. Part of the remaining funds could be added next
year.
The original bill, introduced by Senators Edward Kennedy
(Democrat -- Massachusetts) and Orrin Hatch (Republican -- Utah),
had included $275 million as disaster relief to 16 U.S. cities
which have been especially hurt by the decade-long epidemic.
In a statement addressing the cut, San Francisco Mayor Art
Agnos said, "I understand that we are responding to the
invasion of Kuwait by Iraq, but America is also facing its own
invasion by a killer virus that is wiping out tens of thousands of
lives. . . Today, nine years into the AIDS epidemic, we are still
waiting for a meaningful response from Washington."
In addition to San Francisco, the cities slated for help were
Atlanta, Boston, Chicago, Dallas, Ft. Lauderdale, Houston, Jersey
City, Los Angeles, Miami, Newark, New York, Philadelphia, San
Diego, San Juan, and Washington, DC. As chair of the AIDS Task
Force of the U.S. Conference of Mayors, Agnos sent telegrams to
fellow mayors facing the loss, urging them to lobby for support
of an amendment by Senator Brock Adams (Democrat --
Washington) to restore full funding of the bill. An editorial in
The New York Times, September 14, also called on the Senate
Committee on Appropriations to reverse the decision.
Senator Adams likened the epidemic to other natural
disasters, noting that tornadoes and earthquakes would never
have to wait "another year" for a national response.
The funding could be restored by the full Committee on
Appropriations, by the full Senate, or by the House/Senate
conference which will occur later. No one knows when these
votes will occur, because the schedule will depend on the
current "budget summit" meeting between Congress and the
White House.
The most important Senators are those on the Committee on
Appropriations: Adams, Bumpers, Burdick, Byrd, Cochran,
D'Amato, DeConcini, Domenici, Fowler, Garn, Gramm, Grassley,
Harkin, Hatfield, Hollings, Inouye, Johnston, Kasten, Kerrey,
Lautenberg, Leahy, McClure, Mikulski, Nickles, Reid, Rudman,
Sasser, Specter, and Stevens. If you are a resident of any state
represented by one of the above Senators, then your call to his
or her office will be especially important.
Because the legislative picture keeps changing, you might
want to call an expert AIDS organization to get current
information. Any of the following could help: AIDS Action
Council, 202/293-2886; Human Rights Campaign Fund, 202/628-4160;
Mobilization Against AIDS, 415/863-4676; or National Minority
AIDS Council, 202/544-1076.
NATIONAL AIDS TREATMENT ACTIVIST CONFERENCE,
WASHINGTON, DC, NOV. 10-11
ACT UP/New York is organizing a national meeting of AIDS
treatment activists in Washington, DC, on November 10 and 11,
just before the meeting of the ACTG (the AIDS Clinical Trials
Group, of the U.S. National Institute of Allergy and Infectious
Diseases). The need for the meeting became apparent during
work on ddC access issues, when different activist organizations
independently started working on the same problem without
knowing of each others' involvement. Potential projects include
setting up a nationwide "drug buddy" system (in which activists
work together to study and track the progress of a particular
experimental drug), coordinating efforts on women and AIDS,
and developing the "Count Down 18 Months" campaign,
suggested by ACT UP/New York, for activists from around the
world to campaign and develop research protocols to make all
major opportunistic infections truly manageable conditions.
For more information, call David Gold, 212/741-7790, or
Mike Barr, 212/765-7127.
WOMEN DENIED AIDS BENEFITS: WASHINGTON, DC, PROTEST
OCTOBER 2
The Women's Caucus of ACT UP/DC is planning a demonstration
to be held on Tuesday, October 2, 1990, at the headquarters of
the Social Security Administration in Washington, DC. The Social
Security Administration is being targeted because of its reliance
on the Centers for Disease Control's (CDC) definition of AIDS,
which prevents many women with HIV/AIDS from qualifying
for Social Security Insurance. Because of the CDC's exclusive
definition, 65% of women with HIV/AIDS are unable to qualify
for benefits they need to help pay for food, shelter,
transportation, or childcare.
The CDC's definition of "AIDS" is primarily based on the
symptoms and infections seen in white gay men, and ignores
the symptoms most often seen in women, such as pelvic
inflammatory disease. Individuals who do not show CDC-
defined symptoms are denied access to Medicaid, Medicare, and
Social Security benefits for which they would otherwise qualify.
Consequently, women with HIV/AIDS can die before they
receive any benefits. AIDS is a leading cause of death for
women in New Jersey and New York City, and infection rates
are rapidly increasing.
ACT UP plans to take action that will dramatize the
government's ineffectual response to the needs of women with
HIV/AIDS. The demonstration will take place at the Health &
Human Services building at the corner of Independence and 3rd
Streets SW at 12 noon on October 2, 1990. For more
information, call ACT UP/DC at 202/728-7530.
NATIONAL HEALTH CARE DAY, OCTOBER 3
At least 87 million people in the United States have either
inadequate health insurance or none at all. Those people who
can qualify for insurance have watched their premiums
skyrocket during recent years, and many are frequently denied
reimbursement for experimental, potentially life-saving
treatments. Many others can neither qualify for nor afford
private insurance, and their numbers have long outgrown the
Reagan/Bush allotment for public resources.
To exacerbate this situation, millions of dollars a day are
now drifting toward a war buildup and away from essential
domestic needs, particularly health care programs. On
September 12 a $780 million AIDS emergency spending act was
slashed to $110 million by a Senate subcommittee, critically
jeopardizing an already tardy federal response to AIDS (see
article above, on CARE bill funding).
AIDS has become the rawest example of a larger, chronic
disaster in U.S. health care. Millions of Americans must
routinely wait "another year" to receive proper treatment. Jobs
with Justice, a national coalition of labor unions and community
organizations, is organizing a day of actions for Wednesday,
October 3, to spotlight the general crisis of quality, access, and
cost of the U.S. health care system, and to demand an equitable,
comprehensive, national system of health care for all.
Sponsors of "Health Care Action Day" include the
Communications Workers of America (CWA), Service Employees
International Union (SEIU), and the International Association of
Machinists (IAM). So far the cities planning for activities include
Atlanta, Birmingham, Boston, Canterbury (New Hampshire),
Chicago, Columbus, Denver, Los Angeles, Miami, Nashville, New
York, Oklahoma City, Philadelphia, Pittsburgh, Providence, San
Diego, San Francisco, and Seattle. Unions will also hold noontime
informational picket lines at their worksites. To contact Jobs
With Justice, call 202/728-2395, or 800/4242-USA.
ACT UP/Boston has issued a call for ACT UP chapters around the
country to participate in this effort with local actions: "ACT/UP
Boston urges all groups to seize this opportunity to work with
other groups that will be active on this day, and fight back
against those who are responsible for the state of our healthcare
system." They can be reached at 617/49-ACTUP.
SAN FRANCISCO: CLINICAL TRIALS CONFERENCE,
SATURDAY, OCTOBER 6
An AIDS patient advocacy group has organized a one-day event
to provide information about participating in clinical trials.
Besides panel discussions in English and Spanish, there will be
tables with personnel from leading research centers to answer
questions. The event, "Everything You Ever Wanted to Know
About Being in an HIV/AIDS Clinical Trial," is Saturday, October
6, from 10:00 AM to 4:00 PM, at Davies Medical Center, Castro
and Duboce Streets, San Francisco. It is free and open to the
public; no registration is required. The facility is wheelchair
accessible, and there will be signing for the hearing impaired.
Panel discussions include: Trials 101 -- The Basics (11:00 AM to
12:30 PM, with separate panels in English and Spanish);
Exploring Options (English, 12:45 to 2:15); Pros and Cons
(English 2:30 to 4:00, Spanish 12:45 to 2:15); and Who Has the
Power? (English, 2:30 to 4:00).
The program is organized by Patient Advocates for Necessary
Treatment, and co-sponsored with other organizations including
ACT UP/San Francisco Treatment Issues Committee, AIDS
Service Providers Association of the Bay Area, Black Coalition on
AIDS, Gay Men of Color Consortium, Mission Neighborhood
Health Center, Positives Being Positive, Project Inform, Women's
AIDS Network, East Bay AIDS Center, and HIV clinical trial sites
throughout the Bay Area.
RISE HEALTH EDUCATION WORKSHOPS BEGIN SEPTEMBER 27
RISE, a well regarded program for persons with HIV, teaches a
meditation-based approach to stress reduction, together with
nutrition and other health information. Eight-week courses will
begin September 27 in San Francisco, Oakland, and Santa Rosa;
for persons located elsewhere, there are courses in other cities,
and a self-study manual is available. The program is free except
for $10 requested for materials; no one is turned away for lack
of funds.
A press release from the program's office in Petaluma,
California, describes the philosophy as follows: "Underlying the
RISE program is the assumption that negative thought processes
have become automatic in most persons. To interrupt these
often destructive mental and emotional behaviors, individuals
need to become more aware of their negative patterns of
thinking and acting, while they learn tools to develop beneficial,
health supporting alternative patterns." A study presented at
the Sixth International Conference on AIDS in San Francisco
reported significantly more reduction in depression, anxiety,
and hostility scores after RISE training than after traditional
psychotherapy, traditional stress management, or no treatment
(presentation #Th.B.28).
The San Francisco program will be held at Mt. Zion Medical
Center; to register call 415/885-7529. For Oakland, call
415/655-3435; for Santa Rose, call 707/571-4167. All three of
these programs start on September 27. RISE is also offered in
San Diego, CA; Rochester, NY; Toronto, Ontario; Denver, CO; and
three cities in Oregon (Portland, Eugene, and La Grande).
For more information about the program, or to purchase a self-
study manual, send a self-addressed stamped envelope to RISE,
P.O. Box 2733, Petaluma, CA 94953, or call the RISE office at
707/765-2758.
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