       Being Alive Newsletter
       September 1996

       Farewell, Larry!

       Volunteer Coordinator Larry Bauerle has left Being Alive to
concentrate on his personal health and well-being. Larry started at
Being Alive in October of 1993 and was instrumental in expanding the
alternative treatment programs of Being Alive. Larry worked tirelessly
as a representative of the organization in the Valley and West
Hollywood. He was responsible for recruiting and training most of the
fine volunteers we have coordinating the programs today. His hard work
and energy will truly be missed. Best of luck and good health to you

       Larry!

       **********************************************
       Table of Contents

       Your Nutrition Questions Answered-Individually
         by Jennifer Jensen, MS, RD

       Medical Update August 26, 1996

       Go See Honey

       Wasting Syndrome and Human Growth Hormone
         By Brian Stott

       People with PacifiCare Update
         by John Riley

       News on Opportunistic Infections from the International AIDS
       Conference
         by William Mannion, RN

       Can We Eradicate HIV from the Body?
         by Walt Senterfitt

       Notes From The Director
         by Gary E. Costa

       Bits and Pieces
         by Fran McDonald

       Life Beyond the Big Three
         by Tom Baholyodhin, MD

       AIDS in Africa: A Personal Report
         by Catherine Nyirenda

       **********************************************
       Your Nutrition Questions Answered-Individually
       by Jennifer Jensen, MS, RD

       It seems so simple: What's the best diet for people living with
hiv/aids? I'm asked that question a lot, and I tend to give answers
that start the same way: It depends. Depends on what?-that's the real
question.

       The Bathroom Answer

       If you are hiv+ and have diarrhea, your best diet is one that
contains no fruits, vegetables, whole grains or other "roughage,"
which can promote diarrhea. We can lose a lot of the nutrition value
of healthy food if it just ends up in the toilet. It would probably be
easier to just scrape the health food off of the plate directly into
the toilet and not make the intestines work at processing it first! On
the other hand, if you are hiv+ and don't have diarrhea, the same
foods-fruits, vegetables and whole grains-are among your best food
choices. So, it depends.

       The Protein Answer

       Then there is protein, representing one of the most important
differences between hiv-negative and hiv+ people. People lucky enough
to be hiv-negative need lower amounts of protein than most people
realize. Excess protein is not discarded by the body; it makes a lot
of excess work for the liver and kidneys, just to ditch the surplus.
As a rough estimate, negative people probably require about 60 grams
per day. Positive people can require up to three times that
amount-often as high as one gram per pound of body weight, up to 180
grams per day. Your own individual level can best be determined with
the help of a nutritionist/dietitian specializing in hiv/aids
healthcare.

       A person living with HIV/AIDS may have problems secondary to
just plain old hiv. There's always a threat of liver malfunction
resulting from the use of old stand-by hiv meds. And now there's the
added risk of kidney malfunction caused by protease inhibitors and
other new poly-drug cocktails. So it's important to protect vital
organs as well as to get adequate, but not too much protein. It's far
beyond casual kitchen science-no longer do-it-yourself-work. Too much
protein can be a hazard for these organs, and inadequate protein can
deplete overall immune function. Again, it depends.

       The Fat Answer

       Often weight gain is desirable. For adding pounds quickly
there's nothing more effective than eating high-fat food. This is not
to suggest that these foods are always the best nutrition choices, but
if fast calories are what you need, fat food will do it fastest. Can
you tolerate a high-fat diet? For this answer, we must look to the
health of your fat-processing organs: The liver (liver function
tests), and the pancreas (amylase and lipase tests). Then, there's the
intestines-are you malabsorbing fat? For that answer, look to your
toilet-before flushing. If you have slippery poop that smells bad and
leaves a soapy or slimy layer at the top of the water, you probably
can't tolerate too much fat; now you're in the low-fat group.

       Most people don't know how to dose fat correctly; most hiv/aids
nutritionists do, so seek professional advice. Your own best fat level
depends on many variables.

       Is eating fat a healthy thing to do? Well, not usually. Will
the fat you eat turn into the fat you wear? It depends; it's a matter
of calories. The source of calories has nothing to do with their
ability to become body fat. Let me explain: We all need a certain
number of daily calories for basic energy. Calories are, in truth,
just units of energy. If you spend (use) your energy wisely, like
exercising, and you don't consume more calories than you actually
spend, you won't gain body fat. If you take in too many calories for
your daily workload, that energy will probably be deposited on your
body as flab fat.

       So, the source of the calories has little to do with body fat.
The source is everything as to whether calories are "empty" calories.
Fat calories are usually empty. A donut, for example, has as many
calories as a chicken breast. Each of these foods contributes
calories, which are units of energy. And if either one gives you more
calories than you need, those calories will become body fat. On the
other hand, if you actually need this calorie level, body fat won't
happen-the calories will be used to meet basic energy needs. Calories
and energy; they're synonymous.

       If appetite doesn't happen and you slide into skinny, then add
calories to your diet. If you can't seem to eat enough to gain weight,
then a fat fix may be a good boost for you, especially if all you need
is calories. There is often no nutrient value in food fat. Butter is
nutrient free; it's all fat. (Butter is also my favorite food.) If
you're at your goal weight, butter can add unwanted pounds. If you're
too thin, butter can add desired pounds. It's better to be at your
desired weight than to get too thin. Try to eat good-food fat, like
avocadoes. They have the same amount of fat as butter, but there are
powerful nutrients in avocadoes! Nuts and seeds also fall in the
fat-with-nutrients food group. So, have it all; eat enough calories to
maintain your own personal best weight. Exercise to make sure you turn
extra calories into muscle.

       So, food fat may become body fat, or it may become desired
added weight, as muscle, when used with the exercise method; it
depends!

       The Exercise Answer

       Do you work out? If you don't, and you find yourself with a
little too much "extra" then heed that wake-up call; tone the tummy.
If you're too thin, it's time to add weight and buff up. I can't tell
you what a miraculous feeling it is to work out and gain muscle. It
takes time, but good planning can help. It may actually save time
because you may require less sleep than when you were a slug. (No
offense intended; I personally am a former slug-we've all gotta start
somewhere!) Since muscle is packaged in our bodies along with water,
then the water weight will do two things: it will make you weigh more,
and it will improve your hydration status.

       The Water Answer

       Over the many years I've worked in hiv-based nutrition, one
thing I've seen is too much dehydration. This is, on its own, an
invitation to visit your local neighborhood hospital for a rehydration
infusion. If you drink the wrong water, it could be an invitation to
that same hospital for diarrhea control. Remember, I'm the one nagging
hiv-land about drinking only "safe water" and I regret to say that I'm
still not getting my message out in the meaningful way it takes to get
people to change their behavior.

       I've been doing some water research. As you probably know, in
1993 Milwaukee had a cryptosporidium outbreak. This crisis caused
diarrheal illness in over 450,000 residents, sent 11,000 to the
hospital, and claimed the lives of more than 100 victims. Since then,
there have been water problems in Washington D.C., where water
supplies were stalled for several 24-hour episodes, and once in New
York where residents were told to drink only bottled water for several
days. Crypto is a very very teeny tiny little creature that swims in
chlorine bleach, multiplies two-for-one in iodine, and is
killed-dead-by heat (145 degrees).

       Municipalities, especially Milwaukee, are using ultra micro
filtration, ozone treatments, and ionizations to clean up the water
messes. Will the water scares go away? Absolutely not; if anything,
they'll become more common. Nature makes it happen: Animal dung
contaminates high-ground springs and surface soil. Rain and gravity
bring the dung remnants to lower ground where contributions are made
by other, often different species. Then downhill again, then-etc. Will
animal dung get any cleaner? Will animals restrict their movements to
port-a-potties? Yes! When pigs fly!

       Is your bottle of water safe? Does it really come from where
the label says it does? Is the answer to these questions "maybe"? Then
here are the facts: Bottled water is only required to meet municipal
(tap water) standards. About 20% of tap water can be contaminated.
Logic is wonderful: Bottled water has to be 80% good and can be 20%
bad! Is this risk OK with you?

       What can you do to protect yourself? At home, it's easy. Drink
bottled, distilled water. Distilled water is really just captured
steam, so that tells you it's already been heat-treated; so much for
crypto. You can carry your water wherever you go. But what about ice?
What about sodas in restaurants, movie theaters, bars, etc.? How's
their ice? How neurotic is too neurotic? Remember, a hospital is not a
germ-free environment; and besides, it's not healthy to drink their
water either. Suppose the new "compassionate use" crypto drug (NTZ)
really works; do you want to take it?

       But, what to do when not at home? Like at a restaurant. Order
canned beverages like tomato juice, fresh-squeezed orange juice (not
from concentrate), milk, beer, wine or coffee/hot tea. Remember, all
the extra things you do to avoid drinking tainted water-you'll never
know if it prevented crypto or not. But you will know if unsafe water
gets you! And it is not worth finding out on your own. You can always
bring your own beverage-to restaurants, theaters and sports events. At
least, I've never been busted for this. Back to dehydration: I often
suggest eating foods high in salt because it makes you thirsty. Then
you drink. Safe water. Then the salt helps your body hold onto the
fluids you give it. But some people really shouldn't eat too much salt
for a variety of reasons. Again, this isn't do-it-yourself
nutrition-it depends! Get professional advice prior to avid
salt-eating.

       The Garlic Answer

       There are medicinal foods-they act as immune potentiators.
Garlic is one. I'm often asked about taking garlic pills. Even
"odorless" garlic may cause that "fragrance," leaving you all alone
and highly unpopular in close spaces like elevators. If you're going
to stink anyway, why not just eat the garlic? It's cheaper for sure.
Baking garlic "bunches" can also be a lot of fun! But if you have
indigestion, garlic and other spicy foods may be hard to take and the
pills may then be a better choice. So even the wisdom of eating
medicinal foods like garlic can depend on a lot of other factors.
Never be too far away from your Breath Assure!

       The Fish Oil Answer

       Another medicinal food part is fish oil from high-fat fish like
tuna and salmon (well-cooked please!). Fish oils have been showing
immunological promise for over a decade and you can buy oil pills
everywhere. They're much more expensive than the original fish-way
more! And remember garlic breath? Wait till your friends sniff out
your fish oil pills! Eat the fish, ditch the pills. Spend some of that
old pill money for real fish when dining out.

       Never one to miss an opportunity to mention food safety-fish
oils can thin the blood. Pills are more concentrated; they can make
blood really thin. Often this is good, but importantly, often it is
not. Your own bleeding time is important here, and simple medical
tests can provide the best information on your own bleeding time. So,
fish may be both a medicinal food and also could cause harm. Ask your
doctor. After all, it depends!

       The Dairy Answer

       Now here's a hot, controversial nutrition topic. According to
folk wisdom, either you shouldn't use dairy products or you should.
When folk wisdom gets really prohibitive or absolute, that unbending
"wisdom" isn't an "It Depends" type of approach. Dairy can often
produce serious allergies or reactions. If dairy does not cause
problems for you, using these foods (milk, cheese, yogurt) allows more
freedom for your overall nutrition program. High in both protein and
calcium, dairy products offer seriously good nutritional benefits.
Since nutritionists disagree, decide for yourself-if you have a
choice.

       The Supplement Answer

       For vitamin and mineral supplementation, advice may depend more
on your advisor than on your condition. I've "come out" on this
subject before and nothing's happened to make me change my mind or
alter my advice. My recommendations are always based upon the
circumstances of a given person at a given time. That's why I don't
give specific numbers for the various nutrients. My general advice
agrees with that of even the most avid critics of supplementation: it
is recommended-if only at RDA levels. But we all disagree on the
particulars: which nutrients and in what amounts you should take. If
you're working with a nutritionist who recommends RDA levels of
supplements, my advice is to get a "second opinion."

       The Individual Comment

       The nutrition answers I've suggested here point out the need to
know answers about you, the individual. Who are you, how are you
doing, and what, when and how do you eat? Speaking of individuals,
that's exactly what we all are. And that's what makes hiv/aids
nutrition such a specialized area of healthcare. Remarkably, there
seems to be almost 100% agreement that we are all individuals! That
means that no two people are alike. No wonder the individual answers
depend on you!

       First do no harm. Should the advice in this column be, or seem
to be related to any adverse consequences, check with your doctor
and/or nutritionist. It does matter!

       (Jennifer Jensen, MS, RD, CNSD is in private practice. She
       offers a sliding scale fee arrangement for hiv/aids clients.
       Supplements are provided at cost. She always welcomes your call
       at 310.450.5581, or send e-mail to NutPower@aol.com.)

       ******************************
       Medical Update-August 26, 1996
       presented by Mark Katz MD and reported by Jim Stoecker

       Viral Load Issues

       As we have mentioned in past updates, a consensus is building
that the goal of antiviral therapy is to get the viral load down as
low as possible for as long as possible. But how low is low? In the
past, with the first generation of viral load tests, a count of less
than 5000 viral copies per unit of blood might have been considered
undetectable. At that time, many thought that a count of less than
10,000 meant that there was little cause for concern.

       Now, with second and even third generation tests, we are able
to measure viral copies as low as 50. Thus, what we used to call
undetectable was a much higher level of virus in the blood than what
we might now call undetectable. And this difference can be crucial. A
recent study took a single viral load reading and then determined the
survival statistics for the study group. Those with a reading of less
than 5000 copies per unit of blood had a significantly higher rate of
survival for the six years looked at than did those with a reading
over 5000. So when we talk about undetectable levels of virus, we need
to be sure we know the sensitivity of the particular test that we are
using.

       Questions, of course, remain. Does pushing the viral load lower
(say from 5000 to 50) ultimately make a difference in survival? We do
not as yet have the data to answer this. Most people in the field,
however, would say that the answer is yes. Another important and
closely related question: if the viral load is significantly reduced,
does that reset your survival outcome? For example, if through
antiviral therapy your viral load is reduced from 100,000 copies to
5000, does that mean your survival profile is that of someone whose
maximum reading has never been greater than 5000? Again, we do not
know, though many are guessing that the answer is yes. Obviously, we
need more data to get at definitive answers to these essential
questions for people with HIV.

       Flu Shots Again

       With the coming of fall, we once again have the issue of
whether hiv+ people should get a flu shot. This year, the Centers for
Disease Control (CDC) are still recommending that people with hiv get
this shot. We know, however, from studies released last year, that a
flu shot temporarily raises the level of hiv in the blood. What we do
not know is whether such transiently elevated levels of virus have any
significance for long term health and survival. We can say that people
with hiv do not seem to get the flu more frequently or more severely
than hiv-negative individuals. So should you get the flu shot or not?
This is an issue to talk over with your medical provider. There is
not, at present, a definitive answer.

       Combination Therapy Studies

       We continue to see more studies of combination antiviral
therapies. In a recent Annals of Internal Medicine (August 1, 1996),
researchers reported on a study of 254 people who were previously on
AZT monotherapy. The group was randomized to one of three combination
regimens: AZT plus ddC, AZT plus low dose 3TC (150 mg twice a day, the
current CDC recommendation), AZT plus high dose 3TC (300 mg twice a
day). After one year, researchers report a mean gain of 43 T-cells in
the AZT/high dose 3TC combination, while there was a loss of T-cells
in the other two groups. After a year, there was no statistically
significant difference in viral load reduction among the three
combination studies; all reduced load an average of about half a log.

       We also have results of the so-called CAESAR trial (all at
sites outside of the US and including sites in Canada, Europe and
Australia). Almost two thousand individuals were involved; 80% were
already on some antiviral regimen at the start of the study. Baseline
CD4 counts averaged 130 for the study group and viral load average was
about 100,000 per unit of blood. This study kept everyone on their
present regimen. One third of the group added 3TC and another third
added 3TC and loviride, an experimental non-nucleoside reverse
transcriptase inhibitor. After 28 weeks, the groups that added 3TC to
their antiviral regimen had a mean CD4 rise of 20 and a viral load
drop of half a log. The group that simply remained on their current
regimen, without the addition of 3TC, had no significant change in
these measures.

       What to make of all this? Is it really the addition of 3TC that
makes a combination stronger or would the addition of any antiviral
show similar results? What is the best combination of antivirals? The
answer to this important question is highly individual and only found
through experience. Take what works for you. If you are on a
combination regimen that is tolerable and that suppresses your viral
load, that is the antiviral combination for you. Until we have more
data, that is the best answer we have.

       A Drug with No Name: 1592U89

       There is growing excitement about a new nucleoside analog
antiviral that is under development at Glaxo-Wellcome (makers of AZT
and 3TC). This reverse transcriptase inhibitor does not yet have a
name, so it is referred to as 1592U89. In early phase I/II studies,
this drug appears to be synergistic with (i.e., enhances the efficacy
of) other reverse transcriptase and protease inhibitors. In addition,
it appears to be superior to all current antivirals in penetrating the
central nervous system. Early studies were reported at the recent
International aids Conference in Vancouver. About 60 people, all with
less than twelve weeks of prior AZT therapy, were given the drug. On
this monotherapy regimen, at the end of four weeks, viral load for the
study participants had dropped from 1.5 to 2.2 logs. Further studies
are underway, and word is that Glaxo-Wellcome hopes to have FDA
approval by late 1997. By that time, one hopes, 1592U89 will have a
name.

       The Current Consensus on Antiviral Therapy

       There is a consensus emerging among those involved in treating
people with hiv on how one should approach decisions about antiviral
therapy. This is not necessarily the official standard of care, nor is
it fully backed up by many studies in the medical literature.
Nonetheless, it seems to be where we are today and is worth
considering.

       When to start antiviral therapy? Most would recommend the viral
load as the first marker to consider. If the viral load is detectable
or if the load is above a certain "threshold" (and this threshold is
variously defined), then one should begin antiviral therapy. One
should also consider CD4 count and other clinical criteria when making
this decision.

       What antiviral regimen to use? Usually, people are beginning
with two reverse transcriptase inhibitors (AZT, ddI, ddC, 3TC, d4T).
The most common combination is AZT/3TC and this combination may give
the greatest viral load reduction. Other combination, however, are
being used. How to monitor the efficacy of the antiviral regimen?
Viral load tests should be done every several weeks after initiating a
regimen and then every three months or so. When do you change your
current antiviral regimen? Again, the viral load, the actual amount of
hiv in the blood, is the first marker to consider. If viral load is
consistently detectable or goes up or returns to baseline (i.e., the
level before treatment began) or shows less than a half log decrease,
then a change should be made.

       And what should you change to? Here you have a number of
options with no clear consensus yet as to which is the best. Some
would recommend that you scrap all the drugs that you are on and start
with a whole new combination. Others would say that you can add
nevirapine or a protease inhibitor to your existing combination.

       Cidofovir Approved for Treatment of CMV Retinitis

       Cidofovir (brand name Vistide) has now been approved by the FDA
as an alternative to ganciclovir and foscarnet for the treatment of
CMV retinitis. The major advantage of this new treatment is the dosing
schedule of the drug. Initial therapy with cidofovir is one injection
a week for two successive weeks; maintenance therapy is one injection
every other week. Treatment with ganciclovir, in contrast, initially
requires up to 30 injections in the first two weeks of therapy. The
main side effect of cidofovir is kidney toxicity. The drug must be
infused in a controlled situation. There is also the issue of cost:
some $16,000 per year. This cost, however, may be comparable to
ganciclovir when one considers the cost of implanting a central line
for the infusion of ganciclovir. Gilead, the maker of cidofovir, has
set up a financial assistance program and can be reached at
800.445.3235.

       New Option for MAC Prophylaxis

       To date, we have had two options for MAC prophylaxis: rifabutin
and clarithromycin. The drawback of rifabutin is that it cannot be
used with some of the new protease inhibitors. The concern with
clarithromycin is that one can develop resistance to the drug and thus
not be able to take it as therapy should MAC develop.

       Now the FDA has approved another option for MAC prophylaxis,
azithromycin (brand name Zithromax). The main advantage is that you
need to take only one 1200 mg dose once a week; this is about as
patient friendly a dosing schedule as we could hope for. To date,
there have been no reports of interactions with protease inhibitors.
Research also indicates that if MAC develops, there is less likely to
be resistance to azithromycin than there is to clarithromycin. For all
these reasons, azithromycin may soon become the standard prophylaxis
for MAC.


       ************
       Go See Honey

       I am being very careful not to use names in this narration due
to an archaic and barbarous legal system; therefore this tribute to
the courage and valor of another unnamed PWA links him to the
stupefying number of anonymous souls who have sped through their
lives, to be finally swept away by the cruelly impersonal advance of
AIDS.

       "What Time Is It, Mom?"

       The sun is beginning to slide down the westerly sky and my son
has returned momentarily from his morphine-softened otherworld where
he visits and makes plans with Honey. It was she, better than any
blood relative we have known, who championed him in childhood and
often guided him through the confusing and sometimes perilous moments
of his youthful sexuality. He was able to reveal to her the stuff that
he later told me was not "mommy material." She died of cancer several
years ago, acutely aware that his hiv+ diagnosis would reunite them
shortly.

       I answer, "It's twenty to eight," a stinging reminder that this
is the beginning of the evening of the Fourth of July, the time that
he has chosen to end his life. "I want to go out with a bang," he
announced a few days ago, blasting the final outcome of this bout of
sickness into our reluctant minds. He is looking at me with a loving
trustfulness that transforms his eyes, one of which is completely
blind now, with both of them sunk deeply within darkly shadowed
lavender sockets. They have become, once again, the sparkling eyes of
my robust, promise-filled boy. He asks the time again and I whisper,
"Eight o'clock."

       "I'm ready."

       There are three of us left in the room, out of an original
five, myself, his most cherished female friend and his dearest
companion in his living room, now his dying room, where his hospital
bed is positioned in the center of everything. A short time before, he
did a little horizontal dance for us, shimmying his shoulders to a
tune from Ruthless, remembering that he and his loving companion had
memorized all the words to all the songs and proud that he could still
sing alonga duet for eternity.

       He is ready but I do not think we are, not really. We do not
know yet what it is to be trapped in bodies that have totally betrayed
us. His now plays host to virulent entities that have pushed his
spirit past endurance. Still it is hard to see past our own longing to
keep him with us just a little bit longer. He has extracted promises
and issued invitations for today with a heartbreaking ordinariness. By
four o'clock this afternoon, I wondered if there might be some
surprise appearances, people with whom he had chatted recently.

       I happened in on one conversation; his visitor fighting tears,
as he apologized for not being able to invite her on Thursday,
explaining blithely that he had been forced to limit attendance to his
very closest friends. A double wound that left her rigid with shock
and prompted me to babble inanely while he continued his farewell.
Later this anecdote would become one of the stories we would tell each
other when we needed to smile, when he had pierced one of us with the
poignancy of some off-hand remark.

       At the time of his diagnosis, he began to define those aspects
of his life that he considered essential. The first on his list was
dignity, a rather all encompassing term. As he went on, he became more
specific. He wished to be treated as a human being, not as "a
patient," to make decisions based on living life, not on his
forthcoming death, to surround himself with what he considered
beautiful, to pursue his ideal of romantic love. (If this gives you
pause, be assured, it did me too. I felt he should concentrate on
matters that were important to me, like his health, and avoid wasting
his energy on what I thought were frivolous fantasies. After all, it
was this notion that got him into trouble in the first place, wasn't
it? It wasn't and I was dead wrong. I had a lot to learn about his
activities, that up until now, were not "mommy material.")

       He spoke often of the quality of his life overshadowing the
years that he could remain alive. He dreaded the transformation of his
physical appearance and went to great lengths to preserve his body,
once having a PIC line removed and refusing treatment for CMV so that
he could vacation in Hawaii without the trappings of his disease. When
he returned, he entered a study, one of the many in which he
participated, that allowed him to go every other week for infusions to
treat his CMV and granted him more freedom for the work he so loved.
It was not a successful experience. "If I go blind, I will kill
myself," he said. He had drawn a line in the sand to which he added
being bedridden and incontinent plus loss of his mental faculties and
unmanageable pain.

       He feared that he would not be able to complete his suicide
without assistance and more than anything he dreaded living on in a
coma with the job half done. One by one, throughout what was to turn
out to be the remaining 5 years of his life, he approached us and one
by one, we agreed to help, until, coincidentally, he had gathered one
person for each year. I don't know about the others but I prayed that
I would never be called upon to fulfill my vow. I was afraid that I
would, in the end, be the one to renege, that I alone would fail him.
As it turned out, it was another who did so, the one he referred to as
his "high maintenance" friend. She forgot that this was his drama, not
hers, and fled, disapproving of our lighthearted antics. Another
friend simply could not bear to remain, and showering us with love,
she returned to the warmth of her family. So we were three, constant,
faithful and true.

       Several weeks ago, he was sent home from the hospital with a
terminal prognosis. He had acquired two new opportunistic infections,
MAC and cryptococcal meningitis. The meningitis was increasing his
fevers, nausea, fatigue and vomiting and had made it difficult for him
to walk. If he lingered he could look forward to confusion,
irritability, excruciating headaches, paralysis of one or more of his
cranial nerves, further pressure from swelling of the eye in which he
had already lost his vision, dementia and coma.

       "I'm ready," he said.

       "Are you sure?" we ask.

       "Yes."

       "Are you frightened of dying?" we ask.

       "No."

       "I am going to go see Honey," he told us, "I miss her so much."

       As roman candles begin to flare in a too soon indigo sky, we
start the prescribed process, the series of infusions that will gently
free him from an irreparably damaged body and catapult his spirit
starward where his other friends have gathered to greet him. He does
not leave at once but departs unhurriedly like a courteous visitor
moving steadily toward the door. We are talking to him softly, telling
him and ourselves that it is OK to let go. Time passes slowly and we
are beginning to doubt our methods when finally we are able to
sayGoodbye tender son, mischievous friend and fun loving soul mate, we
will each meet again in time but for now.

       "Go see Honey."

       And he is gone.

       *****************************************
       Wasting Syndrome and Human Growth Hormone
       By Brian Stott

       On August 23, the Food and Drug Administration granted
accelerated approval for the commercial distribution of Serono
Laboratories' Serostim (somatotropin), a human growth hormone for the
treatment of aids-related wasting syndrome. Wasting in people with
aids is a strong predictor of disease progression and death.

       In various studies, human growth hormone (HGH) has shown
significant promise in treating this condition. Under an accelerated
approval program, Serono will be required to conduct additional trials
before Serostim can receive full market approval. Testing will seek to
confirm the positive results found in previous studies and to further
evaluate whether Serostim improves quality of life and physical
performance.

       Serano hopes to be able to release the drug "before
Thanksgiving," and is working to produce adequate supplies, draft
prescribing information, and finalize details regarding distribution.
In the meantime, the drug is available from qualified doctors under an
FDA-approved treatment IND (Investigational New Drug) program. This
type of program has specific restrictions as to who can receive the
drug. The treatment IND program allows Serono to charge for Serostim,
which can cost $150 per day. Fortunately for some, a number of
insurance companies and state Medicaid programs (including Medi-Cal)
are paying for the drug on a case-by-case basis. Serono also operates
an indigent program. For further information regarding drug
availability, patients and doctors can call the Serostim Access Line
at 800.714.2437.

       Weight Loss In People With AIDS

       Unintentional weight loss in people with aids can be caused by
many factors, including opportunistic infections, the use of
medications, or simply poverty. PWAs should be individually evaluated
to determine the causes of their weight loss and to evaluate
appropriate treatments.

       Wasting syndrome is one of the primary causes of weight loss in
PWAs and refers to a condition in which an individual loses lean body
mass, especially from muscle and other vital tissues which are high in
protein. Usually, the body uses sugars to provide immediate energy,
and converts fats to sugars when needed. In PWAs, proteins instead of
fats are converted to sugars to provide needed energy. In the process,
muscles and other structures begin to deteriorate, further damaging
the person's ability to fight disease. Although this alteration of
body metabolism is not fully understood, over-production by the
damaged immune system of inflamatory chemicals called cytokines
(especially tumor necrosis factor) is thought to be among the
principal culprits.

       Treating Wasting Syndrome

       Many drugs are being studied to correct the metabolic process
found in wasting syndrome. Thalidomide has received the most attention
in this regard but has not yet been approved by the FDA for this
purpose. Some of the other compounds which may correct the metabolic
process are available through health food stores and buyers clubs. A
good reference for further information on this subject is the May 1995
of the newsletter GMHC Treatment Issues, which is available from GMHC
(Gay Men's Health Crisis), 129 West 20th Street, New York, NY 10011,
Fax: 212.337.3656.

       Testosterone and other anabolic steroids, while not correcting
the underlying metabolic defect, appear to be effective in
compensating for weight loss due to wasting syndrome. There is
significant evidence that steroids, when combined with exercise,
increase muscle mass and break down fat. Various steroids are already
approved by the FDA and are usually much cheaper than many other
treatments used to treat aids-related conditions. Steroids are also
reported to increase energy and improve overall quality of life.
Adverse side effects may include acne, high blood pressure, liver
damage, personality changes, and increased masculinization. Synthetic
anabolic steroids are less masculinizing than testosterone, and
therefore may be more useful in treating women with wasting syndrome.

       Human Growth Hormone

       As is the case with steroids, human growth hormone has not been
shown to correct the metabolic process of wasting, but it appears to
be able to overcome the defect through other hormonal mechanisms, even
in cases where steroids are not particularly effective. Gordon
Sanford, a physician assistant in the office of Marcus Conant, MD in
San Francisco, has been quoted as explaining who is a good candidate
for HGH as opposed to steroids: "If we had ten patients on steroids
and a vigorous exercise program, nine of ten would gain weight. But
people who are truly wasting-taking in 100% of caloric intake and
exercising but not gaining muscle mass-those are people who will
benefit from HGH."

       While HGH has been used for years in the U.S. to treat hormone
deficiency in children, its use has been highly restricted to prevent
abuse by athletes. There has also been concern that the drug is being
used (i.e., abused) in children of short stature who are not
hormone-deficient. Therefore, very few PWAs have been able to obtain
the drug from the two companies that market it in this country.

       One indication of wasting syndrome is the amount of nitrogen-a
critical component of proteins-which patients lose in their urine. A
1994 study found that patients stopped losing nitrogen about a day
after their first dose of HGH! A 1995 Phase III study of Sterostim
resulted in participants gaining an average of 6.6 pounds of lean body
mass over a 12-week period. Increases in lean body mass were greater
than total increases in weight because the subjects typically lost fat
during the studies. This is what we would expect to see when wasting
syndrome is reversed.

       In various studies the side effects of the use of HGH included
changes in glucose (sugar) tolerance and joint swelling. In most cases
side effects were mild and went away either on their own or when the
drug was stopped or the dose was reduced. Some test tube studies have
shown that human growth hormone may cause hiv to replicate more
quickly. Therefore, hiv+ people should probably combine an
antiretroviral treatment with the use of HGH.

       The Role of aids Activists

       AIDS treatment activists have played a crucial role in
encouraging the development of and access to Serostim. According to a
spokesperson for Serono, gaining accelerated approval "would have been
difficult" without the support of activists. In a news release, the
company gave "special thanks" to Act Up and other organizations for
their support. The FDA confirmed the importance of Act Up's role.

       Activists were especially concerned about the $75,000 maximum
per patient per year price which Serono wanted to charge for
treatments of Serostim. Activist Jeff Getty, of baboon marrow
transplant fame, was able, in direct negotiations with the president
of Serono, to obtain a written agreement capping the price at $36,000
per year in exchange for Act Up's support. Getty, who has received the
drug as part of a long term study, credits HGH with saving his life
and that of several friends.

       It is very likely, however, that Serostim will prove effective
in treating wasting syndrome at a significantly lower price than the
$36,000 per year cap. It is probable that Serostim will show good
results when used at a lower dose than in previous studies, especially
when used in combination with other treatments and an exercise
program.

       Personal Observations

       Since I was first diagnosed with aids several years ago, I have
experienced significant weight loss and have been treated with IV
infusions (particularly TPN), steroids, and other medications in order
to slow that process. In addition, I have maintained an exercise
program to the best of my ability under the circumstances. Although I
believe these efforts were crucial in prolonging my life, I feel they
were stopgap measures.

       I became interested in HGH early in 1995 when my primary care
physician, Michael J. Scolaro, MD, and his staff were working to
qualify to provide the drug under treatment IND status. The first of
Dr. Scolaro's patients received HGH in May 1995, and several other
patients received the drug in the following months. However, my
insurance company declined to pay for HGH, and it was with growing
frustration that I heard glowing reports of the drug's effectiveness
from fellow patients.

       My insurance expired on July 1, 1996 and I began receiving HGH
through Medi-Cal. Administering the drug to myself by injection has
been no problem; it's amazing what one can get used to when working to
stay alive. Although I have experienced some transient side effects, I
also have been very pleased with the visible benefits of increased
muscle mass and improved muscle definition which I believe are the
result of HGH, and which I was unable to obtain through other
treatments and exercise, even before I was diagnosed with AIDS.

       *****************************
       People with PacifiCare Update by
       John Riley

       I hope you have all survived the recent heat and smog wave
we've been having. PWPC did manage, albeit with difficulty, to hold
our monthly meeting for August.

       The dominant topic of the meeting was the recent PacifiCare
corporate acquisition of FHP for $2.1 billion and what impact this may
have on the subscribers living with hiv/aids. When the merger goes
through, the biggest change will be the expansion of PC's service
delivery area.

       We discussed our hopes that other PWPC groups would develop in
the new service areas, duplicating the good that has been achieved
with PWPC and PC working together. We also talked about the
possibility of sharing our accomplishments and information with the
new service units.

       Healthcare and public benefits are institutions in the midst of
a monumental change. It will take years to accomplish these changes;
all the more reason we all need to stay informed and self-advocate!
Being able to communicate our ideas and perceptions to PacifiCare has
enabled us as consumers to help create standards of care for people
with hiv/aids. Working with an HMO that is interested in how their
clients would like to be treated says a lot. Besides People With
Kaiser, I know of no other advocacy group that works in concert with
their healthcare provider.

       Personal Advocacy

       I can't emphasize enough the importance of staying informed on
the issues of health care and public benefits. Take time to read
articles and press releases relating to these issues. We all need to
be "ever vigilant" in our efforts to oversee the metamorphosis of
these social services. We can actively participate in fashioning the
future in our best interest.

       If you have the time and vitality, I suggest you commit to
attending one monthly meeting of any advocacy group which focuses on
issues that interest you. I attend the "Neighborhood Network" meetings
at APLA, held on the first Monday of the month. aids Service Center
holds their meeting on the second Wednesday of the month. Both work in
concert with each other. It can only be an empowering experience and
our community needs your help! Your contact at APLA is Gary Vroman
(213.993.1348). Your contact at aids Service Center is Paul Daniels
(818.796.5633). Tell them John Riley sent you.

       The next PWPC meeting will be the third Saturday, September 21,
from 12 to 2pm at Being Alive in Silverlake. If you have questions or
need information from PC/PWPC please call 213.660.1905 or
800.990.8990. Or you can reach me by fax at 213.662.4901 or by e-mail
at Starboy13@aol.com. Be well and God bless!


       *****************************************
       News on Opportunistic Infections from the
         International AIDS Conference
       by William Mannion, RN

       Although much of the talk in Vancouver was of viral loads and
newer antiretroviral therapies, opportunistic infections were also
discussed. There was relatively little new treatment information this
year. Rather, much of the discussion focused on prophylaxis for OIs
and the cost of such prophylaxis.

       Two Key Studies of MAC Infections

       A trial of azithromycin (Zithromax) vs. rifabutin (Mycobutin)
as MAC prophylaxis showed greater efficacy and lower cost using
azithromycin once weekly as opposed to rifabutin once daily. Further,
azithromycin adds additional benefit to PCP prophylaxis for those
already on Dapsone or Bactrim. A satellite meeting on MAC reached a
consensus that macrolides (azithromycin or clarithromycin) are key
components to MAC treatment; additionally, clofazime (Lamprene) is of
little value in treating MAC. MAC has been a difficult OI to treat and
this meeting should give clinicians some guidance in its optimal
treatment.

       Treating Fungal Infections

       Fungal infections such as cryptococcal meningitis and
candidiasis are often treated with fluconazole (Diflucan). Now a new
formulation of the drug itraconazole (Sporanox) may offer an
additional option. Itraconazole solution has greater bioavailibility
than the capsules currently in use in the United States. The
itraconazole solution is as effective as fluconazole in treating
candidiasis infections. No data were presented on the development of
resistance to itraconazole, an issue of concern with fluconazole
treatment. Look for itraconazole solution to be released in the U.S.
in the future; a new drug application has been submitted to the FDA.

       Wasting Syndrome in Women

       For the first time, significant information was presented on
wasting syndrome in women. HIV+ women lose more fat than muscle,
whereas hiv+ men lose more muscle than fat. One explanation for the
difference is that hiv+ women are likely to be deficient in estrogen
and progesterone while hiv+ men are likely to be deficient in
testosterone. Studies are underway on the use of estrogen/progesterone
replacement therapy in hiv+ women with wasting.

       One study revealed that the strongest factor in weight loss was
a decrease in oral intake. When one is sick or too tired to eat, it is
important to remember that you must eat in order to maintain your
weight and prevent wasting. Another study showed that both physicians
and clients delayed initiating treatment for wasting once weight loss
had been identified. As wasting is a significant cause of death in
people with aids, once weight loss is identified aggressive action
should be taken.

       Complying with Drug Regimens

       Compliance with prescribed therapy was a significant concern at
the Conference. A study conducted at Johns Hopkins University of more
than 200 clients revealed that almost 50% had missed one day of
antiretroviral therapy in the previous week. Similarly, 53% of those
prescribed TMP-SMX (Bactrim, Septra) had missed at least one dose.
Those on drugs three times daily were more likely to miss doses than
twice daily regimens (42% vs. 24%). One hopes pharmaceutical companies
will take note when developing future therapies. Similarly, health
care providers should work with clients to determine regimens which
are easiest for clients to maintain.

       When to Start Prophylaxis

       A session on prophylaxis for OIs reviewed the standard of care
for initiating prophylaxis. CD4 counts at which OIs should be
prevented include: less than 200 CD4 cells/cc for PCP, less than 100
cells/cc for toxoplasmosis (if toxo antibody positive), less than
50-p;75 cells/cc for MAC, and less than 50 cells/cc for CMV. Much
debate continues regarding the utility of fluconazole prophylaxis for
fungal infections. Fluconazole does prevent fungal infections;
however, in ACTG 816 resistance to fluconazole developed in
approximately 6% of clients. Those with fluconazole resistant
candidiasis may require IV amphotericin B therapy.

       Another area of debate is whether to continue prophylaxis if
the CD4 count returns above the level at which one begins prophylaxis.
Some clinicians believe that the immune system will be able to prevent
OIs and therefore prophylaxis is no longer needed. Other clinicians
suggest the CD4 cell function is not fully restored and the need for
prophylaxis continues despite the rise in CD4 count. Nearly all
clinicians agree that once an individual has had a particular OI,
secondary prophylaxis to prevent a recurrence is required at any level
of CD4 count.

       The Cost of OI Prophylaxis

       Cost of prophylaxis was studied by the Harvard aids Institute.
Health care economists evaluate the cost effectiveness of therapies by
calculating the cost of treatment per year of life saved (YLS).
Preventing PCP and toxoplasmosis with TMP/SMX actually lowers the
lifetime cost of treating aids while prolonging lives. MAC prophylaxis
with rifabutin costs $194,000/YLS; this can be lowered by using
clarithromycin ($141,000/YLS) or azithromycin ($63,000/YLS). Fungal
prophylaxis with fluconazole costs $721,000/YLS. CMV prophylaxis with
oral ganciclovir costs $1,272,000/YLS; however, the authors pointed
out that oral ganciclovir is more useful in maintaining quality of
life (preventing loss of vision) than in prolonging life.

       The authors suggest that programs with limited funds (such as
the ADAP program) might consider making certain drugs available to all
who qualify as opposed to allowing the first individuals access to all
drugs and then placing later individuals on a waiting list. Cost of
therapy and rationing of health care were frequent topics of
discussion both in the sessions and in the hallways. Many individuals
pointed out that the cost of aids is not only the direct treatment
costs but also the loss of economic productivity due to the early
deaths of so many.

       Concluding Thoughts

       The major focus of the International Conference on aids was on
viral pathogenesis and antiretrovirals; great hope accompanies the
increased knowledge gained this year. Although at first it appears
little new information came out regarding OIs, actually there has been
a refinement of treatment information and increased options for
treating most OIs. The discussions of compliance finally made drug
manufacturers and clinicians acutely aware of the difficulty clients
may have in actually taking all these treatments. Clients and health
care providers now have multiple treatment possibilities and should
design a treatment plan which will work best for the individual
client.

       (William Mannion, RN, is Nurse Manager of the Immune Suppressed
       Unit at Midway Hospital, Los Angeles.)


       ***********************************
       Can We Eradicate HIV from the Body?
       by Walt Senterfitt

       This question dominated the news from the Vancouver
International aids Conference this summer. The very asking of it is
controversial for fear that it raises cruelly false hopes, distracts
attention from more pressing research or ignores those with advanced
disease and years of drug therapy already. Once posed, however, (by
some of the smartest and most productive aids researchers) it won't go
away until we know the answer. Its hint of possibility of total
victory, of cure, is too exciting to be ignored.

       Even the most optimistic proponents of "The Eradication
Hypothesis," as it's come to be known, argue for caution in the
discussion. Their provisional answer is "who knows?" The most they can
say right now is that for the first time we can raise the question and
design experiments and clinical trials to answer it. The answer may be
"no." Or it may be: "only in comparatively few people." Or it may be:
"no, but we can eliminate it from everywhere but small reservoirs and
can keep it quietly hidden there if people can stay on the drugs
indefinitely."

       Why Can We Raise the Question Now and Not Before?

       The new viral amplification techniques (commonly know as "viral
load tests" or "PCR tests," though not all of them actually use PCR
technology) allow direct measurement of whether or not and how much
virus is in the blood and in any other tissues (such as lymph nodes)
that can be accurately biopsied and tested. These procedures amplify
any hiv or hiv fragments in the tissues tested more than a million
times. It's rather like a huge photographic enlargement or electron
microscopy that allows us to see things that were in earlier times too
tiny to detect. As these tests get more refined, we can be fairly
confident that if they can find no virus in the specimen, that means
there's no virus there to be found. So, one key fact is that we have
vastly better measurement tools.

       Second, the newly available drug combinations are more powerful
than what we had to work with before. Specifically, they are powerful
enough in many people tested to shut down any detectable reproduction
of hiv (known as replication) in the body. When reproduction is shut
down, it is believed that no drug resistance can emerge. Drug
resistance happens, it is now thought, not because hiv mutates in
response to an antiviral drug, but rather because it occurs
spontaneously as a result of hiv's extremely rapid rate of turnover.
If one stops viral replication, no new mutations occur and thus no new
drug-resistant mutations occur.

       Third, Drs. David Ho and George Shaw showed last year that the
rate of virus replication and T-cell turnover is very, very fast. Half
of all hiv in the blood and half of all CD4 or T-cells die and are
replaced every 36 hours or so. If the new potent drug combinations are
used to stop replication, there's no hiv floating around to infect the
new T-cells being made continuously. A whole new crop of T-cells that
are uninfected can replace the old infected T-cell population within
two to three weeks, theoretically.

       This is not enough for a knockout blow, however, because other
cells that hiv infects do not die off and get replaced as rapidly as
CD4 or T-cells. Macrophages, lymph node tissues and other immune
system cells in the lining of the skin and mucous membranes live
longer. No one seems to know yet how long each of these types of cells
live. Dr. Ho hypothesizes that at least most of these cells turn over
within a few weeks to months. He bases this on his observations in a
small number of patients he has studied intensively.

       The viral load of these people all came down to undetectable
levels within a few months, but did so in two phases. The first phase
was very rapid and probably represented the clearing of infected
T-cells from the bloodstream; that brought the viral load down to a
quite low but still detectable level. Then, it came down the rest of
the way more gradually, over three or four months. Dr. Ho deduced that
this slower second phase represents the replacement of the
macrophages, lymph node tissues and other cells that act as the
reservoirs for hiv and which can "re-seed" the bloodstream if they are
not also replaced with uninfected cells. However, it is not yet clear
if all of the infected cells in these "compartments" of the immune
system were in fact replaced. Some may remain latently infected, only
to become activated as little hiv-producing powerhouses at some future
point. (Cells which make and release new hiv viral particles are known
as "productively" as opposed to latently infected.)

       Small Experiments Support an Answer of "Maybe"

       Several small and still ongoing experiments designed to help
answer this big question reported preliminary results in Vancouver.
Two were conducted by Dr. Ho and his collaborator, Dr. Marty
Markowitz, in New York City. One of the studies is of AZT plus 3TC
plus ritonavir in 12 newly infected people; all had evidence of having
been infected within one to four months of starting triple combination
drug therapy. Two of the 12 withdrew and one was dropped; one for
intolerable side effects and two for non-compliance. In the remaining
nine, viral loads became undetectable by three months, using the most
sophisticated tests available which detects hiv RNA down to 25
copies/ml.

       Similar results were achieved in another Ho/Markowitz study of
AZT/3TC/nelfinavir in 12 people with much more advanced hiv infection
but who had never taken antiviral drugs before. This group started
with an average CD4 count of 258 (range 37 to 557) and a mean viral
load of 209,000 copies/ml (the median, i.e., half above and half below
this number, was 81,270 copies/ml). One person withdrew at 6 weeks
with intolerable side effects (diarrhea and abdominal cramping). The
remaining 11 had all reached undetectable viral loads by week 12. In
both studies, after 12 months participants will be invited to have a
lymph node biopsy. If the biopsies show no hiv, people will be offered
the opportunity to stop taking the drugs and then watched closely to
see if hiv comes back, in which case they would start drugs again. If
there is evidence of hiv in the lymph nodes, individuals will continue
on the drug regimen, though perhaps with a reduction in dose.

       Dr. Julio Montaner of Vancouver reported achieving almost as
good results in a group of about 80 patients in Canada who had
intermediate to advanced hiv infection and who had never taken
antivirals before. He used the combination of AZT, 3TC and
nevirapine-the first study of this type to use a combination that did
not include a protease inhibitor. More than 80% of his study
participants became viral load undetectable.

       In all three of these studies, the profound suppression (and
perhaps total cessation) of viral replication has been maintained
indefinitely since being first attained. Finally, Dr. John Sullivan of
the University of Massachusetts Medical School has reported on two
babies born with definite hiv infection, i.e., virus was cultured from
their blood after birth. Both of these babies achieved undetectable
viral loads quickly and have maintained that state. Indeed, they both
show a pattern of losing hiv antibody; they appear to be headed for
becoming definitely HIV negative.

       The Big "Ifs" and Doubts

       One big uncertainty, mentioned already, is the lifespan of the
infected macrophages, lymph nodes and tissues in the "second
compartment" of the immune system. Have they all been replaced with
new uninfected versions of themselves? Or have at least some of them
remained latently infected, and perhaps will for a lifetime, so that
their quiescence will always have to be maintained with some kind of
maintenance drug therapy?

       Related, and even harder to assess with biopsies, is the
possibility of hiv-infected cells in the CNS (central nervous system,
especially the brain) or the reproductive organs serving as latent but
potentially active reservoirs of hiv infection. It is known that hiv
infects some nervous system cells directly, as well as cells in the
testes, and that this happens fairly early. Drugs don't easily
penetrate the brain, so the suppression achieved elsewhere in the body
is probably much harder to achieve in the brain. No one yet knows
whether or not these infected CNS or reproductive cells are capable of
serving as reservoirs that could re-seed body organs otherwise cleared
of all hiv. Needless to say, it is very difficult to get people to
agree to brain biopsies when they are well and even so it is not
certain that one would biopsy the right spot. More broadly we might
say that just because we have sensitive tools to measure hiv doesn't
mean that we can deploy that tool in all the right places.

       This possibility of unreachable reservoirs, of infected cells
that live as long as the person, is probably the central problem with
the eradication hypothesis. As a main proponent, Dr. Doug Richman of
UC San Diego, acknowledged in a press conference after the June
meeting which first brought media attention to eradication: "If hiv is
like herpes, we'll never be able to 'eradicate' the infection. In
other words, herpes infects a type of cell that is life-long, so that
we can only suppress herpes. We can't eradicate it. hiv may fall into
that category, but it may not. If it doesn't, we can still credibly
aim for suppressing it permanently; it's just a matter of potency and
duration of therapy."

       Other studies are being planned on a fast track that will try
to help answer the question of what happens when one stops drug
treatment after a prolonged period of suppression. In one study, for
example, some people would be randomized to complete stoppage of drugs
coupled with frequent follow up tests, some to a lower maintenance
regimen and some to continuing the full dose regimen. Even if
eradication could be achieved, it is not clear how long it would take.
Some of Ho's mathematical calculations suggest an average period of
three years might be necessary to eradicate it from all the possible
reservoirs. These studies may also help answer another related
question: how far along the pathway of disease progression and immune
system damage is it possible to achieve eradication, or even permanent
suppression? In other words, at what approximate T-cell count is it
even theoretically impossible, unless we find effective ways to
restore the damaged immune system?

       Skeptics of the eradication hypothesis believe that it is very
probable that hiv will turn out to be like herpes, in that it exists
integrated within cells that live as long as the person does and which
cannot be killed without irreparable harm to the body. Some of them
argue, therefore, that all this talk about eradication is a diversion
with possibly negative consequences on morale, on risk reduction and
on the pace of research into more pressing questions.

       Comment

       Practical problems abound as well, principally the difficult
problems of high cost and thus unequal access as well as difficult
compliance requirements. In continuing the search for answers to the
questions described above, it is urgent not to slow down the search
for easier methods of taking these drugs and the campaign to vastly
reduce cost and increase equity of access.

       It is also important not to focus solely on those who most
easily show dramatic results -the newly infected, the previously
untreated and the babies. The majority of people who know of their hiv
infection have already undergone drug treatment, often for years. The
immune systems of many are already, alas, severely damaged. As
activists and as the broad hiv community, we must demand that research
be balanced and give emphasis to those who need its results the
fastest.

       It is important that research devoted to testing this
hypothesis be conducted among a broad range of people, including, of
course, women, all ethnicities and all lifestyles. It is not wrong to
start studying a new hypothesis in small groups that are easiest to
access and which promise the most likely positive effects. It is wrong
to end there, or to promulgate drugs or treatments as generally
beneficial when they have only been tried out in limited and atypical
groups.

       With these cautions, I think the thought and the work behind
this new possibility is defensibly exciting. It should benefit all of
us to know much more about the life span and life cycles of all the
cells infected or affected by HIV.

       ***********************
       Notes From The Director
       by Gary E. Costa

       Being Alive's 10th Anniversary

       This fall will mark the 10th Anniversary of Being Alive. In
September 1986, Ron Rose, John Mohr, and Rick Ewing were wondering
what to do after they had all been diagnosed with aids. Since they
were friends, it seemed natural to meet and discuss their problems. In
talking together they found that after dealing with existing local
institutions and agencies, they were left feeling frustrated and
powerless.

       They assumed that if they were feeling this way about the
system, so must the other hundreds if not thousands of others who had
also been diagnosed with aids. They concluded that what was needed was
an organization made up of other people with aids, who, through
self-empowerment, would advocate for the aids community from the point
of view of those who are infected. Over home-cooked meals, they began
to formulate a plan. They first needed to name this forming project.
Ron Rose suggested the name of a Stephen Sondheim song that his
favorite performer, Barbra Striesand had recorded: Being Alive.
"Perfect!" they thought. And they were on their way.

       After a few more informal discussions, Ron, John, and Rick were
joined by Scott Berry. The four men decided to meet every month to
share problems and explore solutions in a social setting. They soon
attracted others with aids and the meetings rotated among their homes.
Thus was born Being Alive's first support group. To spread the word,
Ron took out ads in the personal columns of local bar newspapers and
as an added incentive, offered free roast beef dinners! The monthly
meeting soon became weekly and as attendance increased, so did the
number of weekly meetings.

       When people who were unable to attend the meetings started
asking for copies of the information that was shared at these
meetings, an informal "newsletter" was established to keep everybody
informed of the latest information and meeting highlights. Today Being
Alive conducts over 20 weekly groups and has a newsletter circulation
of over 11,000.

       Being Alive was incorporated in 1987, as a non-profit
organization of, by, and for people with aids. Soon many new programs
were added. The mission statement and by-laws were amended a few years
later to include all people living with HIV.

       With the support of generous friends and funding from
government grants, we have formed a self-empowering community which
reaches over 10,000 people a year through our various support groups,
monthly medical updates, one of the largest hiv/aids treatment
libraries in the nation, a publication and programs exclusively for
women (Women Alive), peer counseling, social events, a speakers bureau
and a host of alternative therapy programs. We currently maintain
sites in West Hollywood, the Women Alive drop-in center in mid-city,
and our headquarters in Silverlake. We are still the only organization
in Los Angeles run completely by and for people with hiv/aids.

       As we acknowledge this milestone in our organization's history,
and prepare for the ever changing, uncertain future, let us remember
the four brave men who despite their own declining health, worked
tirelessly to create a safe place for all of us living with this virus
to connect with one another. Although I never had a chance to meet
these men personally before they passed away, they are four of the
people who have had the biggest impact on my life. To Ron, John, Rick,
and Scott, on behalf of all of us here at Being Alive, Thank You!
Thank You! Thank You! and Thank You!.

       Other Milestones

       100th Medical Update: October will also mark the 100th Medical
Update by Dr. Mark Katz. A special update will be held on October 22
at the Writers Guild Theater. Drs. Aaron Aronow, Jeffery Galpin,
Michael Gottlieb, Scott Hitt and Alexandra Levine will be on hand with
Mark to look back on past successes and give us their thoughts on the
future.

       Spirit of Hope: Being Alive will be hosting the 4th Annual
Spirit of Hope Awards Dinner and Silent Auction on Saturday, November
2, 1996, at the Hyatt Regency in downtown Los Angeles. Volunteers are
needed. Please call Robert Dal Porto at 818.441.4106 for more
information.

       ***************
       Bits and Pieces
       by Fran McDonald

       Project Chicken Soup

       Not long ago, I told you about Jewish AIDS Services; an
important part of that organization is Project Chicken Soup. In
August, the Los Angeles Times had an interesting article about the
Project that many of you may have missed because it was in the Food
Section.

       The Project makes and delivers meals to people with
HIV/AIDS-initially delivering 50 meals, they now have 360 recipients.
To start, they originally had 50 volunteers, now up to 170, ranging in
age from 9 to 88. They stress variety in their fare. Although the food
is not always Jewish, it is always kosher, and the recipes (sometimes
revised to kosher standards) come from cookbooks, newspapers, the
Internet, even volunteers and their families and friends. To give you
an idea of how wonderful these people are, one of their recipients is
tube-fed, but he receives deliveries-flowers instead of food.

       The articles also featured a recipe from one of the volunteers
for potato knishes; I tried the recipe and it's a winner. If you'd
like a copy of this article and the recipe, please call me. For
information on receiving the meals or making donations and
volunteering, call 213.653.8313. And remember, you don't have to be
Jewish to be welcomed with open arms as a volunteer at Project Chicken
Soup.

       AIDS Service Center Thrift Shop

       ASC has a new thrift shop to help generate revenue to support
its many programs. The store is located at 721 East Broadway in
Glendale (818.241.2266), near Glendale Avenue. They need your
donations-in addition to your purchases-to keep the shop stocked. They
need items like furniture, bric-a-brac, clothing, appliances, jewelry,
etc., and you can take your donations to the shop or to the aids
Service Center at 126 West Del Mar Blvd. in Pasadena (818.796.5633).
There is free pick-up of large items within L.A. County.

       Medical Information Bureau

       Many of you may not know about this organization, which is
essentially an information pool shared by insurance companies
nationwide. When you apply for health, disability, or life insurance,
the answers you give in your application are forwarded to the Medical
Information Bureau (MIB) and are available to any insurance company
requesting them. For that reason, you would do well, prior to
submitting your application to find out how your answers may affect
your chances at acceptance. I say prior because once you submit your
application you can be assured that MIB will have all the information
you supplied, whether or not you are accepted.

       You can learn if you have a file at MIB, find out what's in it,
or how to correct any misinformation by calling them at 617.329.4500,
or write them at MIB, Inc., P.O. Box 105, Essex Station, Boston, MA
02112.

       AIDS Walk Reminder

       It's hard to imagine we've been doing this over a decade now,
but Sunday, September 29, at 9am at the Paramount Pictures lot on
Melrose is the 1996 aids Walk to benefit aids Project Los Angeles. As
I do here every year before the Walk, may I remind you to leave babies
and pets at home or in the care of family or friends?

       The day of the Walk is usually hot as blazes and with the heat,
streets and sidewalks that can reach 120 degrees and a crowd of over
20,000 people, this is no place for either a baby or a pet. (Paramount
won't even allow pets on the lot, a ban that should be extended to
babies, too.) I've seen people stumble and fall over strollers and the
babies in them and I've seen dogs drop from heat stroke-some have even
died. Imagine paws on fiery pavement-every year I say, if you doubt
me, just go barefoot all 10 kilometers of the Walk.

       There is hypocrisy in raising funds for a noble cause all the
while endangering, possible killing, a baby or a pet. So get it
together, be at the Walk, raise millions of dollars for aids-but leave
the babies and pets at home.

       (Fran McDonald has been in Social Services for 25 years and
       welcomes your calls at 213.664.4772.)

       *************************
       Life Beyond the Big Three
       by Tom Baholyodhin, MD

       Although good news from the International AIDS Conference in
Vancouver has inspired renewed hope within the hiv/aids arena, there
is a growing concern that prevention efforts may begin to wane once
people believe that a "cure" is at hand.

       A vital question demands further exploration: What are the
options for the growing population of hiv+ people who are unable to
tolerate currently available protease inhibitors? Even among
individuals who can tolerate the side effects of protease inhibitors,
a significant percentage will still fail therapy due to non-compliance
(leading to viral drug resistance), or from rare "breakthroughs"
despite strict adherence to the prescribed three-drug combination.
Preliminary data from the "Crixivan plus Two Nucleosides Study"
suggest that, after 60 weeks of treatment, a persistent,
"undetectable" viral load exists among 80-p;90% of study
participants; 10-p;20% of study participants have detectable levels
of hiv in circulation. The significance of this finding is still
unclear.

       If the goal of triple combination anti-retroviral therapy is to
achieve long term viral clearing, the idea of a safety net is very
attractive. It has been estimated that 12 anti-retroviral drugs will
be available for general use by the end of 1996, thus broadening
treatment options. The next generation of anti-hiv agents approaching
Phase III trials may be categorized as follows:

       Improvement of Existing Classes of Drugs

       Nucleoside Analogues: 1592U89 from Glaxo-Wellcome is a
nucleoside analogue with potent in vitro (test-tube) activity against
hiv-1. Like other agents in this class, 1592U89 inhibits the enzyme
reverse transcriptase, thus preventing viral replication. The valuable
features of this drug are: good absorption when taken orally (the drug
may be taken with food); capability of reducing viral load by two
log-fold when used by itself; ability to increase (on average) CD4
cell count by 100 cells/mm^3 after four weeks; no rapid resistance
seen in vitro; excellent central nervous system penetration.

       Lobucavir (BMS) is another promising nucleoside analogue
currently in development. In addition to good oral absorption and
potency against hiv, Lobuvacir is active along a "broad spectrum"
(i.e., it is active against CMV, Herpes simplex and Herpes zoster,
Hepatitis B virus, and Epstein-Barr virus).

       Protease Inhibitors: Nelfinavir (Viracept) from Agouron
Pharmaceuticals appears to be one of the most potent protease
inhibitors available. One study examining the relationship between
nelfinavir in combination with AZT and 3TC showed an average decrease
in hiv-RNA by 3.6 log. Interestingly, the development of resistance to
nelfinavir still allows susceptibility to indinavir, ritonavir,
saquinavir and VX-478 (a new and highly potent protease inhibitor
compound from Glaxo-Wellcome), thus potentially making nelfinavir the
first line protease inhibitor.

       New Classes of Antiretroviral Drugs

       Nucleotide Analogues: Adefovir dipivoxil (Gilead Sciences,
Inc.) is one of the first nucleotide-class drugs being developed for
the treatment of hiv. Unlike nucleoside analogues which only penetrate
uninfected cells, adefovir dipivoxil is capable of penetrating both
infected and uninfected cells, and a principal benefit is its ability
to stay inside a cell for a long period of time. Adefovir dipivoxil is
a broad spectrum antiretroviral agent, active against CMV, Herpes
viruses, Hepatitis B virus, and HIV.

       Non-Nucleoside Reverse Transcriptase Inhibitors (NNRTI's):
Nevirapine is the first drug within the NNRTI classification to be
approved by the Food and Drug Administration (FDA) for use in
combination therapy. Nevirapine acts by directly inhibiting the enzyme
reverse transcriptase, unlike nucleoside-class drugs which act upon
the same enzyme via a different mechanism (i.e., prevention of hiv-DNA
chain growth).

       DMP-266 (Dupont Merck) is a new NNRTI with good oral
absorption. DMP-266 has a high specificity for hiv-1 reverse
transcriptase and is effective on AZT-resistant viral strains, making
it a very potent agent. In vitro (i.e., test tube) studies with
DMP-266 show resilience against the development of drug resistance.

       Biological Immune Modulators

       Interleukin-2 is a natural cytokine released by T-cells and has
powerful effects on the growth and differentiation of immune cells
(including T-cells, B-cells, and natural killer cells). Preliminary
data indicate that Interleukin-2 is capable of stimulating dramatic
increases in CD4 cell counts in people with early hiv infection.
Although Interleukin-2 is generally well-tolerated, some people
develop a flu-like illness with each infusion. This form of infusion
approaches the reality of "immune reconstitution" (i.e., the ability
to restore a damaged immune system to normal function).

       HBYO97, mentioned at the Vancouver conference, is an intriguing
compound designed to prompt hiv-1 genetic mutation and cause the virus
to be less virulent. Other novel cytokines, e.g. "C-C chemokines" (a
substance produced by CD4 cells, CD8 cells, T-cells, and macrophages),
can stop hiv replication in vitro and prevent HIV from entering into
human cells.

       (Tom Baholyodhin, MD is an HIV specialist who is actively
involved in clinical research at Kraus Medical Partners. For
additional information, contact the KMP Research Hotline at
800.860.0700).

       *********************************
       AIDS in Africa: A Personal Report
       by Catherine Nyirenda

       (Catherine Nyirenda presented the following remarks at a
       Plenary Session of last summer's International AIDS
       Conference.)

       Let me first introduce myself. My name is Catherine Nyirenda,
and I come from the southern African country of Zambia. I am 24 years
old, and I have two sons, Darlington and Simon, who are 3 and 1 years
old. I am not married, and live alone with my sons in Lusaka, the
capital of Zambia. Lusaka is a city of about one million. Within the
City, I live in Mutendere, a crowded residential area.

       Zambia

       Before I get onto the main subject of my talk, which is about
the impact of hiv on the family and children, I want to explain a bit
about Zambia.

       My country is very poor. The annual income per person in Zambia
is the equivalent of $300 a year and it is very unevenly distributed,
so that 70% of people live below the poverty line. This means that
they spend most of their total income on basic food alone. I am a
typical urban person, so let me briefly explain what I spend in a
month.

       In one month, I earn about 50,000 kwacha, which is worth us$50.
We'll talk later about how I earn it. This is how I spend my monthly
earnings:

       My rent is $25 per month. If I don't pay, I can get credit for
two months, but if I fail to pay after that time I will be thrown out.
I spend the next $11 on maize meal, our staple food. I have about $14
left for everything else. Charcoal to cook on, cooking oil and
vegetables each cost $12 in a month. This leaves $2 for the month to
buy sugar, soap, baby requirements, my own clothes, transport, health
needs and medical services.

       My impression is that the North is sick of poverty and death in
Africa-this is all that gets attention in your news. Many may think
that suffering is normal for us-but it isn't. We hurt and grieve and
hunger as much as you would, and we hate disease, poverty, poor
medical services and schools.

       In Zambia, the family is of great importance. We pride
ourselves on looking after our relatives, including the sick and the
orphans. This can be hard at times especially with the poverty
suffered by most families. Health services are very basic, even where
the commitment of the Ministry and its staff are good. Some drugs are
supposed to be free-like TB medicine-but they are often unavailable so
people have to buy them privately.

       There is hardly any safety net for people unable to cope with
poverty. Some projects and NGOs offer services in particular areas,
but this extends to very few people. Last year, it was shown that only
3% of the population had contact with social welfare activities, half
of this being non-Governmental. The annual Government social welfare
budget is less than $1 for every person in Zambia.

       These harsh realities are being made worse by hiv. hiv
currently affects up to one-quarter of the sexually active population.
Everyone knows people who have died, who are sick, or who are
positive. Everyone knows orphans, many of whom are unloved, uncared
for, and uneducated. hiv in a situation of harsh poverty is
particularly cruel. It takes away our children's parents when they are
most needed, both economically and emotionally. Quietly and gradually,
hiv has eaten into many families in Zambia, causing high levels of
hardship and distress.

       Impact of HIV on the Family and Children

       I want to speak now on the main subject of this speech-the
impact of hiv on the family and children. I am going to speak here
from personal experience, so first I will tell you about the impact of
hiv on me and my family.

       In 1991, when I was 20 years old, I was living in the house of
a preacher. That year, I was sick, and contracted an STD. After
treatment, the STD persisted and I was told I should go for an hiv
test. When the test came back, the results were positive. I went back
to the priest's house, and told him what had happened. Over a short
period of time, he became more and more unfriendly. He said that he
feared catching the disease from me, and said that it was embarrassing
for him to share a house with me. Later, they chased me out of the
house. I went to my sister's house, but her husband felt the same way
as the priest and insisted that I couldn't stay.

       I knew then that I would have to support myself, and find a
place to live by myself. I looked for a job, and managed to find one
at an organization called Kara Counselling and Training Trust.

       Kara is an organization primarily concerned with hiv and aids.
Although at first the job was a way of earning money, Kara's work
gradually drew me further into the organization. In 1992, I became the
only woman member of the Positive and Living Squad (PALS), formed at
Kara by Wingstone Zulu, the first Zambian to declare his positive
status publicly. I began to move more and more into outreach work,
doing aids education for different groups and workplaces, always by
explaining that I was myself HIV+.

       In 1993 and 1995, I became pregnant. I became pregnant because
I wanted to. It is very difficult to come to terms with not having
children, particularly in Zambia, a place where childless women are
outcasts. My colleagues at Kara and in the support group were not
happy about me, a colleague, not following my own advice. Most people
condemned me outright for having two children. I was seen as
irresponsible, and a bad example to hold up as an educator. My own
needs as a woman and mother were not considered, and I had little
support from people whose support I most needed. I soon had to leave
my job.

       My oldest son, Darlington, was sick sometimes, but overall has
been healthy. After two years, I could have him tested for hiv, but I
have not done it. Because he hasn't been very sick, I dare to hope for
the best. If the result were positive, I could not cope with that. If
it were negative, I would have to face seriously the problem of who
will look after him to adulthood. My second son, Simon, is a sickly
child, and I have had problems with him at times. The sicknesses are
never too serious, but they just keep coming.

       In the last year, my financial problems have worsened, as I can
only pick up occasional work as an outreach educator or assistant on
hiv research work. With two babies, one sick, it is hard to be
available for work on some days.

       I have also become more isolated. My sister lives in Lusaka,
and I see her quite often, but she often speaks harshly of me, saying
I have been irresponsible. But she is my sister, and my closest
relative who may accept to look after my children when I die, so I
keep friendly with her. She has also agreed to care for my children so
that I can be here to speak with you at this conference.

       HIV and Children

       Hiv affects many children who are not infected by the virus. It
affects children whose brothers and sisters or parents are infected.
Children as young as 8 years old nurse their parents as they die. This
often means that they are unable to attend school.

       The children rarely have assistance and support in coping with
their stress and grief. When a child's parents die, they may only have
more distant relatives to turn to for support. Some aids orphans are
well aware that they are unwanted and resented by their distant
relatives. Sickness prevents parents from earning money. Consequently,
we have seen a steady increase in child malnutrition since 1992.
Chronic malnutrition now affects 44% of urban children, and 60% of
rural children. The nutritional status of Zambia's children is amongst
the worst in the world, and it is made worse by AIDS.

       With no money, children also cannot go to school. For primary
school, pupils needs uniforms, shoes and socks, books, and other bits
and pieces, costing about $25 per child a year. This is too expensive
for people with low incomes, or large families. Teachers are reporting
increased problems in school from children who are tired, hungry,
distressed or agitated by their home situation, mostly due to hiv and
poverty. Teachers try to help, but have few resources and little time.

       HIV and Parents

       Hiv attacks relationships between men and women. The arrival of
hiv in a family usually causes tension between husband and wife for
the obvious reason that it reveals infidelity. Women know that many
married men are unfaithful, but they can't talk or act. They fear that
their husbands may beat them, or throw them out, leaving them unable
to support themselves or losing their children. There are many women
who contract hiv after they know or suspect their husband is infected,
as they do not dare to ask their husbands to use condoms or discuss
his status. Men also suspect women of extra-marital affairs, and are
likely to respond by throwing women out of the house.

       HIV and Young Women

       I wanted to mention young women in particular, since the
infection rate among teenage girls is so great. According to one
survey nearly one urban girl in five is hiv+ by the age of 20! In
Zambia, many young women are involved in relationships with older men,
who we call "sugar daddies." The stereotype of this relationship is
the fat man in the Mercedes Benz, taking school girls to expensive
hotels. If this were the extent of the problem, the numbers would be
limited. But the truth is that many, perhaps most, older men have
teenage girlfriends. They think that young girls are free from hiv.
The girls-and often their parents-see the sugar daddy as a way of
relieving their poverty.

       Alleviating the Impact of HIV

       Of course we have programs in Zambia to combat hiv/aids and its
consequences. There are Government programs, Aid programs, NGO
programs, Community programs and Church programs. Some very dedicated
officials in the Ministry of Health struggle to coordinate all
these-somewhat like UN officials struggling to coordinate the tribes
of the Balkans or the warlords of Somalia.

       Part of the problem is lack of resources-Yes. But if I may be
pardoned for making an observation that may hurt some of you here: a
large part of the problem is that hiv/aids is not the only item on the
agenda of many of these programs. We have recently seen the end of a
large aid program whose objectives included funding universities in
the donor country. Less than half of the money was actually spent in
Zambia and even then, much of it was spent on research of doubtful
usefulness.

       The various Churches have policies which contradict each other
and cause confusion. Use condoms, don't use condoms, condoms are not
effective anyway. Talk about sex, don't talk about sex. Who are we to
believe? And similar differences appear between NGOs. For what it is
worth I think this: that if hiv/aids and its consequences were the
only item on the agenda of all of us who are in the fight then we
would get a lot further with the resources we already have.

       Conclusion

       I have told you everything I could about the impact of aids on
children and families in Zambia. Now I will return home to be with my
two young sons in a country where only a tiny few can dream of ddI and
AZT.

       Thank you for providing my accommodation while in
Vancouver-which costs the equivalent of 3 years rent for me.

       Thank you for my air ticket, the cost of which would feed my
children from now until they reach adulthood, God willing.

       Thank you very much for listening.

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