Subject: Being Alive '93 #6
Date: Jun 1993 (1871 lines)

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   B E I N G    A L I V E   --   L. A.
People With HIV/AIDS Coalition Newsletter
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People With HIV/AIDS Action Coalition Newsletter
June, 1993

This is the Being Alive Newsletter (June 93)

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

Medical Update:  April 26, 1993
Aids-Related Peripheral Neuropathy
Importance Of Hiv In Lymph Tissue
A Word Of Caution
Friends In High Places -- What I Learned At The March On Washington
"Donuts With Donna"
Being Alive In DC `93
"Someday My Prince Will Come"
Preparing For Death Or Giving Up Hope?
Bits And Pieces -- Social Services
The President's Notes
Collected Wisdom June 1993
Community To Honor Mark Katz

La Diarrea Y Como Tratarla
Tratamientos Alternativos Viviendo Mas...Y Mejor


*****


MEDICAL UPDATE:  April 26, 1993

presented by Mark Katz, MD and reported by Jim Stoecker

SIGNS OF HIV SEROCONVERSION

     Medical researchers estimate that at least half of people
who seroconvert experience a flu-like illness at the time of
initial infection.  Fever, headache, muscle aches and the like
are common symptoms.  In addition to the flu-related symptoms,
there is often a skin rash.

     Researchers report that CD4 count can drop precipitously at
the point of initial infection.  It takes the immune system some
time to mount its response and produce antibodies.  In the
meantime, the body is vulnerable to infection.  Oral thrush has
been observed in those who have recently seroconverted.  And some
researchers even report cases of PCP in those newly infected.

DETECTION OF HIV IN SEMEN

     A recent article in the Journal of Infectious Diseases
reported on a Stanford study of 36 HIV+ men.  Researchers, using
highly sophisticated testing techniques, detected HIV in 87% of
the semen specimens provided by the men.  This detection rate is
higher than we have seen in previous studies.  In addition, the
Stanford study found no correlation between the presence of HIV
in the semen and the man's stage of HIV disease or whether he was
on an antiviral.  Previous studies had said that there was a
correlation with use of antivirals and with stage of disease.

THE EFFECTS OF ALCOHOL AND DRUG USE ON HIV PROGRESSION

     Studies on the effect of alcohol, cocaine and marijuana on
the progression of HIV disease have reached contradictory
conclusions.  Some say there is no effect and others say there
is.  We do know that cocaine increases HIV replication in the
test tube.  Whether the drug has this effect in someone who is
HIV+, however, has not been proven.

     A recent study, reported in the Journal of Infectious
Diseases, looked at the effect of alcohol on HIV replication.
Once again, however, we do not have a study of people with HIV.

     Researchers formed a group of people who were not infected
with HIV.  They asked them to measure their alcohol consumption
over the weekend and then divided the group into light, moderate
and heavy drinkers.  Blood specimens were drawn from the group
before and after alcohol consumption, and these T-cells were
infected with HIV in the test tube.  What the researchers found
was that there was increased syncytia formation and p24 antigen
levels after alcohol use, even for those categorized as light
drinkers.

     Because we once again have a test tube study rather than one
of people actually infected with HIV, it is difficult to
determine the clinical relevance of this study.  What is the
effect of alcohol and drug use on HIV disease progression?  We
still do not have a clear answer.

AZT RESISTANCE REVISITED

     Researchers in the New England Journal of Medicine recently
reported the case of a young man who soon after initial infection
with HIV, had rapidly falling CD4, despite AZT therapy.  They
soon found that the virus from the initial infection was, in
fact, resistant to AZT.  When the man was switched to ddI, his
CD4 began to improve.

     Resistance usually occurs after long term AZT use.  If such
an infected person infects someone else, he or she may pass on a
strain of the virus that is AZT resistant.  That is apparently
what happened in the case noted above.

     Back in 1987 when AZT began to be widely used, physicians
assumed that someone on AZT would remain on the drug
indefinitely.  There was no reason to assume otherwise.  As time
went on, however, physicians saw that AZT began to lose its
ability to forestall CD4 drop.  We then began to look at the
question of the virus developing a resistance to the drug.

     Now we know that most people, after long term use, will
develop some degree or other of AZT resistance.  We know from
various studies that a person is more likely to become resistant
if the CD4 is low when AZT is first used. Researchers estimate
that if AZT is started when CD4 is under 100, 87% will develop
resistance within twelve months.  In contrast, if AZT therapy
begins when CD4 is greater than 500, only about 30% develop
resistance after one year.

     How do we know someone is AZT resistant?  Unfortunately, we
don't have an available test that can look at an individual's
viral strains and determine if any strains are resistant to AZT.
Physicians must use their clinical judgment.  If a person on AZT
develops an opportunistic infection or experiences the return of
symptoms that disappeared with AZT use, resistance can probably
be assumed.  And if CD4 begins to fall after a time on AZT,
resistance can be suspected.

     What to do if AZT resistant?  In the past, physicians just
took the patient off the drug.  Now we know that if the patient
is tolerant of AZT, the best course is to stay on AZT and add
another antiviral such as ddI or ddC.  The current thinking is
that there are multiple strains of HIV and an infected individual
may harbor any number of different strains.  Some may be AZT
resistant, while others are not.

     The important thing to remember is that resistance does not
mean toxicity.  It does not mean that AZT is hurting you. Rather,
for the resistant person, the drug has to some degree lost its
effectiveness, and should be supplemented.

UPDATE ON PROTEASE INHIBITORS

     We have been reporting on protease inhibitors for over two
years now.  This drug holds great promise because it targets a
specific step in the HIV life cycle and is able to work in
chronically infected T-cells, i.e. cells where HIV has already
copied itself into the nucleus.

     A number of large drug manufacturers are developing a
commercially marketable form of this antiviral.  The involvement
of so many "big guns" in the pharmaceutical industry is itself
encouraging news.

     Studies in humans have already started under two
manufacturers.  Abbott Laboratories studied an intravenous form
of the drug in Amsterdam and has reported some spectacular
results.  The protease inhibitor appeared to completely abolish
any evidence of the virus.  No other drug yet studied in humans
has been able to make such a claim.

     The problem with this antiviral is that it is poorly
absorbed by the body.  The Amsterdam study required continuous IV
infusion over long periods in order to get the results noted
above.  Clearly, eight hours a day hooked up to an IV is going to
impact a person's quality of life.  An oral form of the drug is
needed.

     Abbott has developed an oral form and has moved into a Phase
I dose escalation study.  Although the drug appears to be
tolerated, it is still being poorly absorbed.  The problem with
the current formulation is that it has what we term a "narrow
therapeutic window."  If you give too much of the drug, serious
liver problems develop.  If you give too little, you lose the
ability to effectively fight HIV.  So it appears we still have a
good deal to learn about appropriate dosage.

     Studies, however, are moving forward.  Roche, manufacturers
of ddC, have also developed an oral form of protease inhibitor.
This is being studied under the auspices of the ACTG. The study
compares various combinations of AZT and ddC and the Roche
protease inhibitor.

     So, after two years of talk, we now are seeing some action
in getting protease inhibitors into a form useful to people with
HIV.  As always, things are not moving fast enough, but they are
moving.  The promise is there.

CONVERGENT COMBINATION THERAPY TRIAL

     In last month's update, we discussed the upcoming trials of
convergent combination therapy.  ACTG 241 will look at the
effectiveness of combining AZT, ddI and nevirapine.  Participants
must have a CD4 under 350 and have been on ddI or AZT for at
least three months prior to the start of the study.

     The local site for ACTG 241 is USC and we reported that all
slots had been filled.  We now have a correction from Ms. Yvonne
Barranday, Study Coordinator at USC. She tells us that initial
slots have not been closed.  USC is accumulating a list of people
interested in participating in ACTG 241, and will add names to
the list until the study is open and all slots filled.  Names
will be drawn at random from the list for screening appointments.
If interested in this study, call Ms. Barranday at 213.343.8288.

CLARIFICATION ON INTRAMUSCULAR PENTAMIDINE

     In the January update, reported in the March Newsletter, we
discussed a study at Mount Sinai in New York that used
intramuscular pentamidine as PCP prophylaxis.  Apparently we did
not make it clear that, at the present time, this is an
experimental regimen only.  It has not by any means become a
standard of care.  As we reported, this approach to PCP
prophylaxis holds promise for those intolerant of Bactrim/Septa,
but further study is needed to assess intramuscular pentamidine's
effectiveness and cumulative safety.

*****


AIDS-RELATED PERIPHERAL NEUROPATHY

by Mark Denzin

     It is commonly assumed that peripheral neuropathy is
frequent in late-stage HIV infection.  This, however, is
uncertain; many patients with late HIV infection show no signs of
neuropathy. The most common symptom is severe, burning, aching
pain in the feet and legs, which may prevent walking.

     The causes of this disease are uncertain, though some
researchers feel it may relate to HIV infection of nerve root
ganglia.  This, however, has not been documented.  CMV may be
responsible in some cases.  The prognosis is generally poor,
although a few patients seem to respond to ganciclovir.

     Burning, aching and the sensation of bruising are also known
side effects of the antiretroviral nucleosides ddI and ddC. The
most common toxicity of ddI, after diarrhea, is painful,
tingling, burning, aching peripheral neuropathy of the legs and
feet, occurring early in treatment.  Discomfort may be disabling,
prohibiting walking, disturbing sleep and making the activities
of daily life difficult.  DDC causes the same adverse reaction
and, with both drugs, the symptoms may worsen even after the
dosage is lowered or the drugs discontinued.

     In my own personal observation of hundreds of HIV patients,
peripheral neuropathy is almost always associated with drug-
related toxicities.  Aside from ddI and ddC-related neuropathies,
I have observed many patients who present neuropathies shortly
after initiating high or prolonged doses of AZT, as well as
Septra, an antibiotic frequently prescribed for infections and
sometimes as a prophylactic for PCP.  The burning, aching
sensations of neuropathies of the legs and feet are one of the
most painful and debilitating conditions associated with AIDS.

     In Chinese medicine, nerve pain is caused by disharmony in
the liver, affecting the nerves.  When the excessive Yang of the
liver flares up, the nerves are injured and feel as if on fire.
Treatment is directed toward purging the liver fire, protecting
the kidney essence and heart Yin, and reducing the pain with
appropriate herbs.  In most cases, herbs to remove heat toxin
from the blood are also appropriate.

     Acupuncture therapy may be effective if the neuropathy is of
recent onset.  An aggressive treatment plan is indicated, 2 to 3
acupuncture treatments per week, 12 to 18 treatments in all,
followed by rest and a second course of treatment as needed.

     Recent research has shown that capsaicin (the active
ingredient in hot peppers) cream massaged into painful areas is
beneficial for patients with diabetic neuropathy and renal
failure-related neuropathy.  In my own practice, I have found
capsaicin cream (available as Zostrix from GenDerm Corporation)
in combination with acupuncture, massage and other medicinal
herbs to be helpful for patients with extremely painful
neuropathies.  DDI and ddC, however, must be eliminated or
prescribed in lower dosages for acupuncture therapy to be of any
benefit.

     (Mark Denzin is a licensed acupuncturist and physician of
Chinese medicine, practicing in San Francisco.  He may be reached
at 415.252.9040.  Reprinted from the San Francisco Sentinel,
April 29, 1993.)

*****


IMPORTANCE OF HIV IN LYMPH TISSUE

by Walt Senterfitt

     Dr. Tony Fauci, a government laboratory scientist and chief
of the government's AIDS research, reported in the March 25, 1993
issue of Nature his laboratory's work to date on AIDS
pathogenesis.  He has been investigating what happens to HIV
during the period of clinical latency that sets the stage for the
destruction of the immune system.

     "Clinical latency" refers to the period between the initial
infection with HIV (when virus can be detected in the blood and
there are typically flu-like symptoms) and the time several years
later when T-cells decline and symptoms eventually appear.  In
other words, what's going on under the surface during the
"healthy asymptomatic stage"?

     Fauci investigated the lymph nodes taken from HIV+ people at
several stages of infection, grouped as early (more than 500 CD4
cells), intermediate (500-200) or advanced (less than 200 T
cells) infections.  He found that even in early stage, when there
is no detectable p24 antigen or viral particles in the blood,
there has already begun a hyperplasia (overdevelopment) of the
lymph nodes with a host of HIV virions trapped along a mesh-like
grid made up of long spindly cells called follicular dendritic
cells.

     Fauci speculates that this "trapping and holding" process
(which is what healthy lymph nodes are supposed to do) helps keep
the blood free of virus (a good thing) but may also lure
"unsuspecting" T cells into the trap where they can be infected.
Many of the trapped cells are coated with immune system proteins
and therefore probably cannot be infectious, but no one knows for
sure.  Even if most of these cells cannot infect, others in the
vicinity of the "traps" are vulnerable.

     By the intermediate stage, many cells in the lymph node
itself have been infected with the virus and probably transmit it
to other CD4 cells.  Furthermore, the "architecture" of the
mesh-containing centers of the lymph nodes has begun to be
destroyed.  This not only means that fewer HIV virions can be
trapped, but also fewer of other types of pathogens.  Some HIV is
detectable in the blood but not nearly as much as in the lymph
nodes.

     By the advanced stage, the trapping mechanism has been
entirely dissolved.  Other lymph node tissue is heavily infected.
The virus detectable in the blood stream has come much closer to
equalling that in lymph node cells.

     Fauci has also investigated the role of early HIV infection
in the thymus gland, at least in SCID-Hu mice (who have had their
own immune systems destroyed and replaced with human immune
cells).  The thymus gland is a lymphoid organ essential in the
maturation of T-cells, including directing some to become T4,
others T8, NK (natural killer) cells and the like.  This work is
more preliminary but shows that HIV can infect (beginning in an
early stage) the T-cells and their precursor stem cells right in
the thymus, as well as gradually destroy the nurturing
environment necessary for maturation.  It's as though HIV invades
and trashes the "T-cell nursery."  This work is at a beginning
stage, but points to the key role of the thymus in early
infection and pathogenesis overall.

     Fauci also noted that we know that cytokines (the immune
system proteins that act as messengers or regulators) play a key
role in stimulating HIV replication, even though we don't know
all the details.  He rhetorically asked, "What could possibly be
a more potent generator of cytokines than these activated lymph
nodes?"

     What's the significance of these developments?  One thing is
finding out quickly whether antiviral drugs have any effect on
this HIV trapped in the lymph nodes or invading lymph node cells.
Fauci says a lot of data has been collected but in studies still
blinded.  Another is, researchers must develop ways to assess the
effect of any current or new antiviral therapies on HIV in lymph
tissue and not just in the bloodstream.  This includes more
isolated lymph cells in the skin and mucous membranes.  Finally,
it points to the need for earlier treatment, but with different
and better agents than now available.

*****


A WORD OF CAUTION

by Walt Senterfitt

     In a laudable urgency to circumvent the inevitable and the
gratuitous delays of drug development, underground channels
develop over and over again by which some folks obtain drugs
(like nevirapine and its relatives) generally available only in
limited clinical trials.  We have always applauded the courage
and ingenuity of most of those in the treatment underground
(while pointing out the inequity of access which the cash-only
and sometimes-high prices of the underground perpetuates).

     However, risks are involved and sometimes not fully
appreciated.  The range of safe doses has not yet been fully
established in many of these drugs, particularly in combinations.
As we have found before with even such "establishment" drugs as
ddI as well as more unconventional drugs like compound Q, the
toxic side effects can be quite severe.  Nevirapine, for example,
seems to be safe and well tolerated (alone or with AZT only, at
least) up to 200mg/day. At 400 mg/day, (a dose which induces a
striking drop in p24 antigen levels) more than half of study
participants developed moderate-to-severe rashes, liver function
test abnormalities or other side effects.  Most of these effects,
however, did not develop if the person first escalated to the
400mg/day dose with a lead-in period of 2-to-4 weeks on 200
mg/day.  A higher dose, 600 mg/day, was attempted, but was found
to cause even more side effects which were not all ameliorated by
the lead-in period.  (At least one case of life-threatening
toxicity has been reported, in someone whose liver turned out not
to metabolize the drug at all, allowing enormous concentrations
to accumulate in the blood.)

     So, be careful.  Keep on top of the facts and arrange for
very close monitoring, if you choose to use outside a trial.
This and other new drugs are not yet widely available in the
underground, but probably will be.  We'll publish what we know
when we know it.

*****


FRIENDS IN HIGH PLACES -- WHAT I LEARNED AT the march on
washington

by Ferd Eggan

     "Were you there?"  Richard Burton asks portentously, eyes
goggling in terror, in The Robe, that masterpiece of 50s ersatz
religion.  He thinks he is going mad because he can't get over
the guilt, shame and awe he felt as the centurion directing the
gruesome execution of Jesus.  Several hours of basso bathos and
religious conversion later, on my TV in the Hyatt Capitol Hill,
Burton and Jean Simmons refuse to bend their knees and worship
Caesar.  Eyes on the prize, they walk out of the Roman court into
paradise, leaving behind the jeers of the frightened Caligula,
50s queen par excellence, Jay Robinson.  I love these historical
conjunctures.

     I have to admit that at least one reason I disliked the 1993
March on Washington for Lesbian, Gay and Bi Equal Rights is
because I spent a week in DC with at least 150,000 fags and I
didn't even get laid.  I thought it was significant.  But
seriously, I also felt very disturbed by what the March did and
did not do.  Were you there?

     I spent Thursday in meetings with the Department of Housing
and Urban Development, struggling to change regulations in order
to make PWAs eligible for CDBG-funded programs as handicapped
individuals.  Such a change would mean programs that serve us
would not have to prove that every last PWA was low income, a
requirement that violates our confidentiality and that
discourages small AIDS service agencies from even applying for
CDBG/HUD funding.  The meetings were fruitful; the HUD officials
listened attentively to my argument.  It was curious that these
were the very same career officials who had denied this request
for several years.  They said now the Administration was
sympathetic, so they were too.

     That evening I had dinner with some of the AIDS power
lobbyists, who recounted meetings with Donna Shalala, with Ted
Kennedy, with Nancy Pelosi.  I admire and like these "angle
queens," but I was aware that I felt an increasing disquiet.
Something was wrong with that setup.  The compromises required to
negotiate increased funding, or to nominate an acceptable "AIDS
Czar" have become more acceptable now that we have a friendly
administration.  Yes, the implacable refusal of the last twelve
years is gone, and yes, we are able to meet with the President to
discuss AIDS and even lesbian/gay acceptance, bending the knee to
Caesar.  But the HIV+ Haitians in our US concentration camp in
Guantanamo and the PWAs in Newark who received zero dollars in
Ryan White CARE supplementary funding from HRSA are AIDS victims
of the new Administration.  My dinners in DC made me very worried
about the emerging shape of the first 100 days and of our
influence on the rulers of our country, a reality where the
panoply of court is more alluring than the urgency to make
Washington change.

     In my old Marxist days, we pointed to two ways a social
movement was emptied of its potential to make fundamental change.
The first and the easiest was cooptation, where well-meaning
individuals are lured into supporting the powers that be through
the offer of power or privilege.  Even more sinister, cooptation
often wins support by persuading those who demand change that
circumstances permit only half a loaf, sometimes a substitute
loaf that is of dubious nutritive value at that.  And the fact
that I felt a twinge of envy over the clout and skill of other
"angle queens," their access to the higher presences, was a clear
sign to me that the new Rome on the Potomac offers the
possibility of corruption in a personal way and a growing danger
to our movement as we bargain for an AIDS agenda for the 90s.  Of
course, the even more pressing first question was whether we will
even develop an AIDS agenda for the 90s.

     The second way that a challenge to the status quo is
neutralized is through what is termed recuperation, a larger
political process where a whole movement is inveigled into
fighting hard for a change that seems radical but actually plays
right into the same old inequalities of power.  On Thursday and
Friday in DC, I watched hundreds of lesbians and gay men of color
meeting to strategize about AIDS.  Both the Gay Men of Color AIDS
Institute and the National Minority AIDS Council reasserted the
crying need to organize and fund efforts in their communities,
efforts that still have to be painfully fought for against vocal
opponents (mainly but not exclusively white) who accuse them of
"fractionalizing the AIDS community."  Los Angeles suffers under
the illusion that we are erecting a multi-cultural gay and
lesbian infrastructure here; some activists are busily
reinforcing racist hierarchies of power by asserting AIDS makes
us all one.

     At the March on Sunday, I heard only three speakers even
talk about AIDS.  All three were PWAs.  Others couldn't quite say
the A-word; I think David Mixner only said "this plague."  (I
admit my attention was sometimes distracted and I might have
missed something.)  The speakers reminded me of The Robe :
mostly I heard speakers indulging in kitschy tearful moments
instead of facing real tragedy and real joy.

     My complaint is not just the usual carping about my own
"special interest group."  I believe that the entire range of
concerns, from AIDS to lesbian healthcare to parenting to the
legal protections of lesbian or gay couples through marriage or
domestic partnership or whatever to mutual support in combating
substance abuse (the most widespread epidemic in our communities)
were all sacrificed and shoved to the outer edges of the
spectacle.  The right-wingers may be right:  somebody up there
has a homosexual agenda, but it ain't me, babe, and it ain't the
women and men I was with.  Were you there?

     As the music stirred into the Star Spangled Banner, even the
completely righteous demand of lesbians and gay men in the
military for just treatment was sacrificed to an agenda that goes
way beyond assimilation, that sinks into normality. Assimilation
is at least a strategy, one that I don't find very useful, but
one that can argue for itself as a way to win civil rights under
the law.  But this March seemed to proclaim that we are not
worthy of even that strategy.  I heard it as a Uriah Heep-like
humbleness, that we are fit only to whine our gentle, angry pride
in being exactly like everyone else, that repudiated all the
unique contributions we have to make because of who we are.  One
of the March organizers (a lesbian with impeccable ACT-UP
credentials) is reported to have said on TV, "for every drag
queen or leather dyke, there will be ten people who are normal."
Out of the catacombs and into the imperial court.

     Speaking of ACT-UP, only the lesbians with AIDS
demonstration at HHS seemed to have any edge to it.  The later
demonstration at the Pharmaceutical Manufacturers Association was
energetic, and a cool reunion for many of us with old friends
from the Supreme Court demo in 1987 and the FDA demo in 1988, but
that was that.  The Hands Around the Capitol had all the
excitement and impact of "I'd like to buy the world a Coke."
Sadly, AIDS demonstrations go unheeded and some even argue they
are now unneeded.  Worse yet, the National March on Washington
Committee sabotaged the Monday demonstration for national
healthcare at the Capitol.

     The MOW Committee originally was a sponsor of this civil
disobedience action, but they withdrew their support and reneged
on their promise to at least advertise the demonstration.  The
Committee asserted they did so because a CD action would
jeopardize their tax-exempt status.  (I wonder what they thought
the Sunday March was, if not a political action?  I'm like,
"Hello, is the revolution a garden party?") The action that could
best have united lesbian and gay energies around desperately
urgent common needs for healthcare, the one political challenge
that could channel all the accumulated experience and knowledge
we have gained through our agonies of the last decade, fell into
oblivion.

     Everyone in the universe says that the high point of the
whole weekend was the Dyke march on Saturday night.  Twenty
thousand lesbians ruled the streets and had the courage and humor
to say "we recruit."  I didn't go, of course, but I'm sure glad
it happened.  We all know that those dykes have less investment
in being normal; after all, normal means women earn 59 cents for
every dollar men earn.  And lesbians and gay African-American or
Latino or Native American men have made the only sensible
arguments about the almighty military issue. The armed forces
provide a real career option for many poor people.  I wish nobody
needed such a career option, but dammit, they should have the
right to decent pay and self-respect in uniform if they want.  As
for me, I don't want to be in their stupid army anyway.  My
friends Jeanne and Mary from Chicago made a sticker that said,
"If you have a uniform fetish, try being a bellboy."

     My fellow curmudgeon, James Carrol Pickett, wrote an
eloquent bitch about the MOW entitled "Death of the Queer(s)."
We both felt there were more and better politics in hundreds of
thousands of queers just having fun all over town than in the
whole March.  Even queers in suits seemed to be acting on the
belief that if you eat pussy or suck dick, why you're a living
rejection of normality in and of your beautiful self.

     In fact, when g/l movement experts pooh-pooh radical fairies
or dyke pornographers by saying that most lesbians and gay men
just want to be like everyone else, I don't believe it any more.
I grew up in a small town in the "Heartland," and I know that our
sisters and brothers out there have more complicated stances
toward sexuality and liberation than Beltway lobbyists give them
credit for.  Yes, a lesbian or gay men anywhere experiences
unbearable oppression and often feels compelled to conceal in
order not to be despised.  But she or he also takes some pride in
difference and gratefully seeks others of the same kind.  Almost
all of us have recognized at some time or other that oppression
at least gives us a reason to form community.

     I am deeply suspicious of strategies put forward by some g/l
leaders that are based on the unsubstantiated belief that the
majority of our people fight off oppression by wanting to be
normal.  It is a strategy that has no basis and no direction
except a narrow struggle for civil rights under the law.  Civil
rights, as every leader from Malcolm X to Ryan White has said,
are not enough.  Above and beyond civil rights are human rights,
including the right to be alive and the right to be free in body
and mind and the right to act in one's best interests.  Our
society believes such rights are inalienable, and the twentieth
century has seen many struggles to make certain that civil law
does not contradict those human rights. Originally, the gay and
lesbian movements tried to assert our human rights, and they
believed the goal was liberation of our whole potential as human
beings with important contributions to make to society.  To
achieve liberation, I think, we have to examine and advance all
the astonishingly diverse concepts, behaviors, feelings, goals
that we have invented to make ourselves what we are.

     Being in the company of one million of us in DC was an
unmistakable proof of the infinite variety of our lesbian, gay,
bisexual, transgender lives.  But I'm mad and disappointed that
uniformity was the order of the day.  I am compelled to the
conclusion that our movement is being coopted and recuperated.
In the last twenty-five years we have been leaders in America
through our energetic struggles for liberation.  We have the
power to do away with many of the structures of inequality and
injustice in this country, and our experiences combating
violence, oppression and epidemic diseases have given us the
skills.  But we are being hijacked, taken for a ride into
unquestioning allegiance to institutions that serve no one, and
least of all us.

     The hijackers are not the right-wingers, whose real goal is
that we just die.  Other leaders who position themselves as
moderates know they can't get away with killing us outright, and
in fact they have a very realistic assessment of our economic and
political value.  Moderates want communities of color and of
social deviants to be loyal workers, consumers and voters.  But
our insistence that the American system change to accommodate us
must be neutralized, and if the neutralization is to work then
"some of our own kind(s)" have to be found to do the dirty work
of coopting and recuperating. Hence, the hijacking.

     So now I'll go all the way and reveal that I'm truly a
crackpot:  I believe the March on Washington, behind the
beautiful excitement that brought a million dykes and fags to the
Capital, was a conspiracy.  I believe that some gay men and
lesbians whether through sincere convictions that a narrow
strategy can win something or through corrupt aspirations to be
powerful decided to throw out all other concerns expressed in the
daily lives of 10% of the population of this country and go for a
fight with the military.  In doing so, they conspired to try to
make us all respectable and normal, and they even conspired to
rip off the gay and lesbian soldiers and sailors themselves.
These GIs are brave, not because of military valor but because
they are willing to sacrifice careers to create decent, honest
lives for themselves.  But their bravery in creating lesbian and
gay lives has been turned into first, a reduction of g/l life
into a "status" and a "behavior" that can be negotiated, and
second, a bid for funds and power for lobbying formations.

     The 1987 March on Washington was the explosion that signaled
an unprecedented flowering of lesbian and gay struggle, including
ACT-UP, every conceivable kind of cultural production, the
revitalization of lesbian discourse about sexuality, economic and
social difference, Queer Nation, the call for marriage, domestic
partnership or some kind of institutional protection for couples
and new families, the consolidation of queer buying power and
voting power.  You name it and we've been there in the last five
years.  And in reality, AIDS was what fueled that explosion.

     But April 1993 in DC didn't raise these many issues.
Instead we waited for hours in the hot sun to be counted as a
tame constituency for leaders who ask us to bend the knee to
Caesar.  All during the day, I missed hundreds of friends who
should have been part of an energetic celebration and powerful
assertion of gay and lesbian vitality, but couldn't be there.
They are dead.  Remember that a Being Alive member, Carey Junkin,
invented The Wedding in 1987?  But the 1993 March on Washington
ripped off all the rage and power of the AIDS movement and every
other gay and lesbian movement.

     So, I've made my complaint.  Could I have done any better?
And what do I think we should do about it?  First, I think we gay
men and lesbians living with HIV/AIDS need to take a hard look at
what we can expect to gain from government now, and what we have
to do to achieve our goals.  Complacency about a new
administration will win us nothing.  Every lobbying visit, every
letter or phone call to Congress, every street demonstration,
every hug to a PWA is a step toward ending the epidemic.  It is a
paradox that AIDS is not a gay disease, but the murderous impact
on our communities means it is a gay problem.  We are not even
noticing how AIDS has changed our population; a substantial part
of a whole generation is gone, and we had better make our AIDS
agenda and our g/l agenda broad enough to deal with communities
that are lopsidedly young and old.

     Another part of what we need to do is to learn how our
movement was formed and how it works.  Let's study and dialogue
about what it means to be queer, or gay and lesbian, bisexual,
transgender/transsexual.  But let's get beyond that tired debate
about whether it's genetic or social conditioning.  The history
of our movement is about self-creation, both individual and
social.  Let's talk about what we want to create.  Let's have a
vision that informs our political goals, instead of spontaneously
reacting to each new problem.  What we need is a strategy to
transform society and to win what we need.  And let's make sure
to strategize about our whole agenda, and take back the power to
define ourselves from the religious right.

     And I believe we can begin to implement a call for learning
and strategizing right now.  Beginning this month, with the local
Pride Celebrations, we can set a goal of developing a consensus
strategy and presenting it at the 25th anniversary of the
Stonewall Rebellion in June of 1994.  As people living with
HIV/AIDS, we have a particular contribution to make.  Many of us
have lived through the entire 25 years of post-Stonewall history.
All of us have learned something about courage, about principles,
about facing adversity.  We have much to teach about strategy.

     When Richard Burton and Jean Simmons ascend to cinemascope
heaven at the end of The Robe, it's a moment of sloppy
sentimentality, but I always love it.  With Caesar demanding
obeisance, the Court paralyzed and corrupt, the big stars are
transfigured because they act on what they believe and accept no
compromise.


*****


"DONUTS WITH DONNA"

Lesbians AIDS activists meet with Health and Human Services
secretary

by Mary Lucey and Nancy MacNeil

     Early on April 23, eighteen lesbians gathered at the
entrance of the Department of Health and Human Services (HHS) in
Washington DC.  We were there for "donuts with Donna," our title
for our historic meeting with Donna Shalala, recently appointed
Secretary of Health and Human Services.  As we waited, our
supporters carried pink signs with black triangles and pictures
of lesbians in leather saying "Read my lipstick, Lesbians get
AIDS" and "HHS:  Dykes Die from AIDS."  While we waited for
security clearance, we reflected on what it took for us to get to
this point.

     We had been trying to get here for at least the last six
years.  We had written letters, done phone zaps, sat in offices,
shouted in the streets, broken into places, been arrested.  We've
had to fight for the bare minimum.  There would be no women's
health committee at the AIDS Clinical Trials Group if it weren't
for women with HIV and AIDS activists.  There would be no change
in the CDC definition, if it weren't for lesbians with HIV and
lesbians who participate with ACT UP.  There would be nothing at
all for women.  There would not be the one trial there is on
invasive cervical cancer, if it weren't for us.

     We did the research that nobody else was willing to do.  We
demanded the first national conference on women and HIV.  We had
to "sit in" in peoples offices; we had to threaten, to get a
simple conference on women and HIV/AIDS, ten years after the
beginning of this epidemic.

     We were escorted to a government-sized conference room, with
a government-sized conference table.  Government officials from
the FDA, the CDC, HRSA, and various others were seated in chairs
that lined the walls.  At the table were three or four
assistants:  the assistant to the Secretary of Health, the
assistant to the assistant, and so on.  We took our seats at the
table, lesbians with HIV/AIDS, seronegative lesbian partners of
women with HIV and our advocates.

     We represented Los Angeles, San Francisco, the Bronx,
Harlem, New York, Tampa Bay, Boston, Seattle, and Chicago.  When
Madam Secretary, Donna Shalala, arrived, we proceeded with
introductions, affiliations and purpose.  We called her Donna and
gave her a box of donuts and set the ground rules for the
meeting.  We were there to be heard.  We would talk and she would
listen.  We insisted on a reasonable length of time that we
deserved her attention.  She originally was going to stay for
five minutes, agreed to stay for twenty and actually stayed for
forty.

WOMEN TO WOMEN TRANSMISSION

     We first talked about woman to woman transmission.  We said
that you're wrong about woman to woman transmission, that your
policies and myths about lesbians and AIDS are killing us. It's
not right that we don't know what safer sex is for us. It's not
fair that our lovers are at risk because nobody wants to listen
to us.  The CDC classifies us as heterosexual women. We are not
heterosexual women.  We are lesbians.  And that shouldn't mean
that we don't matter.  It shouldn't mean that we are robbed of
our lives or of our quality of life or of prolonging our lives.

     When we read research and it says that the epidemic is
spreading out, that the face of AIDS is changing, we have to ask
if anyone ever read the first papers that were ever written on
AIDS.  If they would bother to read the first research papers,
they would find out that we were there: bisexuals, lesbians, and
IV drug users.  We were all there in 1980 among the first papers
that were published and everything about women with AIDS has been
suppressed ever since then.  We are the face of AIDS.  The
"lowest risk" category was defined by the assumptions of men as
to our sexual realities.  These assumptions are false and we are
living proof of that.

     At a woman's clinic at Bronx Lebanon Hospital, there was a
lesbian who was HIV+ who used to come there for her care. Every
time she came for an appointment, she brought her lover. She
received her care there for one year, and for one year her lover
came with her.  The lover was never invited in so that someone
could talk to her about medical issues, support issues, emotional
issues or safer sex.  Heterosexual couples are routinely
counseled.  If a husband comes with his wife, he is invited in to
talk about these things.  But this woman, an HIV-lesbian,
partner of a woman with HIV infection, was never invited in.  And
guess what?  She's HIV+ now because no information was provided
to her about safer sex and about any of the dynamics of the
relationship.  It's appalling that so many lesbians have died.
We are not your disposable population.

     A CDC official once said to us:  "Why should we study woman
to woman transmission?  Do lesbians have sex?"  That's our
government's response to this ever increasing crisis.  That's how
we are being treated in this crisis.

HOW RESEARCH EXCLUDES WOMEN

     Grant applications for the epidemiology study on women with
AIDS have been submitted to NIAID. This is the first natural
history study of women in this epidemic, eleven years into this
epidemic.  We had to demand that a woman with HIV sit on that
review board and be a part of the grant review process. And we
told Madam Secretary that if this woman had not been there, those
grants would have gone to the same people who get funding every
single time.  Only four of the 25 grants that were sent in to do
this natural history study were going to ask any questions about
women to women sexual behavior, even though we have been
documenting this and putting this out there, talking to the
people in government, talking to the people at the CDC and at
NIAID.

     And now that we have a woman's health committee, people are
talking about only gynecological manifestations.  We do not want
to ghettoize this research.  Lesbians and heterosexual women are
three times more likely to get lymphoma; they are also more
likely to get MAI.  They are not able to get into those trials.

     Once more, there are huge gaps, huge areas where no research
is being done at all, research on things that should be easy to
find; treatments for bacterial pneumonia and sepsis.  Women are
dying of those diseases because they are not high profile
research areas at all.  Also when they think of women in research
they only address cervical cancer and nothing else. There is no
requirement at the AIDS Clinical Trials Groups that there be a
gynecologist on the research team.  We want a gynecologist, not
an obstetrician.  They may have a GYN somewhere in the hospital
who is not on the research team. When a woman comes in, she has
to go to two places to get monitored or to collect the data.
This is unacceptable.  Also every time the researchers talk about
women in trials they talk about procreating women, and we all
care about those women, but we also care about women who do not
fit into that category.

     There is little documentation being done on women.  There is
censorship of published data.  There is purposeful
misinterpretation of data to support the myth of "lowest risk."
There is serious lack of funding for proposals to do studies.
Forty percent of all women surveyed have sex with other women.
They are five times more likely to contract HIV than women who do
not have sex with other women.  Yet several studies remain
unpublished.  There is suppression of this information because of
discrimination and bias.

THE LACK OF SERVICES FOR HIV+ LESBIANS

     Many of the women being seen at AIDS clinics across the
country are lesbians.  We also have legal, financial, child care,
welfare, medication, transportation, psycho-social, housing, and
sexuality needs.  These issues need to be included in everything
we do.  Women in general and especially lesbians do not seek
support until they have full blown AIDS.  Existing service
organizations discriminate against lesbians.  A woman was denied
housing because her lover is HIV negative.  The reality, for us,
is that with lesbian couples, you're not going to find a lot of
couples where both partners are HIV+. There are more sero-
different couples in the lesbian community than in the gay male
population.

     Criteria for services are not designed to meet our needs.
We have special needs.  We are different people, living under
different circumstances.  Criteria have to be changed.  There's a
lot of lesbians who never access the AIDS organizations. There
are no recovery programs designed for lesbians.  You cannot put
us into the white heterosexual drug programs any more; it doesn't
work.  They just tell us to wear skirts and lipstick.  We have a
great failure rate because of this type of bias and
discrimination.  Women with AIDS in prison should have access to
the community standard of care.

QUESTIONS OF ACCOUNTABILITY

     We asked for the resignation of James Curran from his
current position at the CDC effective immediately, as well as
other people whom we hold accountable for our deaths.  We need to
hold David Kessler accountable for knowingly excluding women from
research for the past 16 years.  You have to do house cleaning at
the CDC and the FDA.  We may have a new government, but we have
some of the same old tired faces.

     The planning councils across this country are not helping
women with AIDS.  There are women, holding those seats, women
with the power to vote and determine where funding goes.  The
majority of these women are representing gay men and their
organizations.  The majority do not represent the women.  We have
to implement some kind of evaluation system that insists that
clinics and organizations service women.  In the whole country
there is not one single government AIDS service provider agency
that is geared towards meeting the needs of women.  The planning
councils have to be evaluated.  Education materials need to be
geared towards women and toward lesbians in particular.  We have
virtually no literature that reaches injection drug users.

OFFERING SOLUTIONS

     We told Shalala that we had come to offer reasonable
solutions to the government.  This administration has to try to
talk to the people who know.  They have to do outreach and work
with the HIV+ women themselves, and the people who do technical
assistance with these women.  Then the government has to talk to
us.  They could do something different, treat the people in this
room a little differently than the last administration.

     We have answers, we have solutions.  A good example would be
the Ryan White monies...a provision that you're supposed to have
monies for women and children or you're not going to be funded.
You can use that mandate with a referral.  For example, in New
York City, there are plenty of clinics that are getting the
monies who don't have gynecologists on site.  They don't have
specific physicians dealing with women.  If we had powerful
people and a lobby based on the hill, we would be able to address
that but we don't.  We're doing the best we can to straighten
this out so that women get all the entitlements that they can.
So our strong message to Madam Secretary was to please start
talking to us, too.

     We emphasized that we are the people that HHS needs to pay
close attention to, not the power brokers, not our so-called
representatives, not the "power lesbians."  Because when the
power lesbians come to the table, they do not talk about AIDS.
They definitely do not talk about lesbians and AIDS.  And most
importantly, they do not represent us.  Only we represent us. We
need access to power.  We need to mandate a national lesbian with
HIV/AIDS task force that is made up of women like us who know
what we're going through.  Lesbians with HIV who know the
struggle of being women, of being lesbian, of being HIV+.  We
want it mandated that there be homophobia trainings, so that
service providers are aware of the needs and issues that lesbians
have.  And it's within the power of this administration to do
that.

     We set a date for a follow up meeting in June.  We left with
hopes that this is the beginning of an ongoing dialogue with
people in power.  We also had some fears that what we said may
have fallen on deaf ears.  We also made it clear that we're not
giving up, that we would not go away.  No one could shove us
under the rug or into the closet.


*****

BEING ALIVE IN DC `93

by Corey Smith

     Being Alive's presence at the March on Washington last month
was broadcast coast to coast via CNN.  Our colorful banner carried
by Sam Raygoza, Jose Torres, Al Ballesteros, Ron Christopher and
John Buse, with President of the Board of Directors Walt
Senterfitt looking on, was most in the nation's face at the
Saturday demonstration called "Hands Around the Capitol."

     On that overcast morning, I could feel the excitement
building hourly.  We met in the staging area by the reflecting
pool at the Capitol Building, facing the Washington Monument.  At
about noon, the massive crowd that had gathered to carry one
continuous red ribbon around the building began to move.  This
tremendous effort symbolized a unified show of concern to our
nation's law and policy makers for the need to increase budgets
allocated for HIV awareness, education and prevention programs.

     When all of us began to move out, the line of people reached
completely around the huge building three deep.  When the
demonstration concluded, a moment of silence was observed for the
hundreds of thousands who have died from this tragic epidemic.
At that, a gentle mist began to fall, tears, I thought, from
heaven.  Not heavy enough to disperse the crowd, nor to undermine
the feeling of the moment.  More like an affirmation that our
efforts do not go unnoticed.

     Being Alive members should take pride in the commitment to
fight for our civil rights shown by those from Being Alive who
made the journey to Washington.  Most came by plane, but I know
of one who rode a bus four days across country to be with us.

     I want to acknowledge the courage of Orlando Powers, who
although appearing in great discomfort at that time, together
with Sam Raygoza, carried our banner the entire 3.5 mile march
from the Washington Monument, past the White House and to the
Capitol Building.  They carried it not just for you and I, but
for all those living with HIV in our community.  They carried it
united in one common cause to fight with all our strength to
achieve our goals of secured and enforced civil rights for all
people in this country.

*****

"SOMEDAY MY PRINCE WILL COME"

by John A. Johnson

     I went to the march in Washington on Sunday, April 25.  The
day before, ten thousand AIDS activists, joined by a red ribbon,
surrounded the Capitol as much to remind our law makers that AIDS
is still a crisis as to remind our lesbian and gay community
leaders that AIDS is still the number one problem in our
community.  Dead people do not need civil rights.  During the
march, except for references to this "plague" and this "tragedy"
and other euphemisms used to avoid the "A" word, many would think
that the crisis was over.  I realize that there are other issues
facing our community that need to be addressed.  Lesbians need to
be acknowledged for their contributions to the community, and
some of the other issues are equally important, but that was no
reason to push AIDS to such a low visibility at this march.

     A good time was had by all with the parties and the
opportunity to get together with friends usually scattered around
the country.  I still think the money would have been better
spent ensuring that President Clinton could fulfill his promises
by electing officials that support his policies.

     The anticipated appointment of an AIDS "Czar" didn't happen
during parade week.  If we are lucky, no one will be.  I gave up
the idea that someday a knight in shining armor would gallop into
my life and everything would be forever wonderful.  This is part
of what I call the "Someday My Prince Will Come" syndrome.  The
few men in my life I assigned that role stabled their horse in my
house for a while and then galloped off into the sunset leaving
me to shovel the mess out.

     The AIDS community is not a monolithic body with everyone
having the same ideas on how best to handle this crisis.  Not the
social worker on delivering social services, not the medical
doctors on delivering medical care, not even the HIV infected can
arrive at a consensus on what everyone needs.  I can imagine the
stress and loss of sleep people assigned to find this person must
be experiencing.  Actually the position would be best described
as AIDS coordinator and the person holding it would never have a
moment's peace.  Having the job of determining what projects
involving AIDS needed the most attention and money is not a job I
would want on a national level, but like everyone I have opinions
and would not rest until this person heard them.  Over and over
again.

*****

PREPARING FOR DEATH OR GIVING UP HOPE?

by Sean Kinney

     In the last several months, I have embarked on a journey
through an undiscovered forest of complicated decisions.  For
years I knew this was coming.  With no haste now, tomorrow is
here.  In what I consider a very short period of time (six months
to be exact), I am flooded with decisions on treatments that
affect the balance of my life.  How often I have heard and read
about how one day this time would come.  My perspective they said
"would change..."; it has.

     We have two choices in this disease.  We either prepare
ourselves for the inevitability of AIDS or we fight the process
each and every day, every hour.  I think it is fair to say, that
in very broad terms, the thousands of people with HIV in my life
share one of these two philosophies.  For years I based my
decisions on the second philosophy.  Without notice I am moving
towards the former.

     Already I hear you saying phrases like "giving up,"
"bringing it on," "not very aggressive."  Perhaps.  But when do
we just say enough, and live with what God is offering?  Since we
have no clue what comes after this, why is it not OK to run
towards it?  Listen, you do not have to be around this once 6'3",
225lbs man long, not to know that things are continuously
changing.  I find myself right in the middle of watching other
people's lives change as they watch my downward spiral.  It is
those I love that will remember this journey.  If I can be honest
with AIDS in my body, they can accept the emotional struggles.

     Let's talk about hope for just a minute.  Hope has been
given a bad rap.  We are only taught through the words and
actions of others that hope is for good things to come.  Today I
hope for understanding, for the will to accept, for the support
of so many, and yes, for the success of the thousands of men and
women who will one day trip upon the final solution to this damn
mess.

     My dear friend Richard Porter clued me in to a beautifully
strong image; Lady Liberty of Justice holds hope and acceptance
on her perfectly balanced scale.  Since my release from the
hospital following a bout of PCP, this image has ruled my life.
I see myself coming to terms with the thought that should today
bring the cure, for me it will be too late.  There seems no
returning from the point where I am now.  A better decision seems
to be acceptance, while I hope for tomorrow.  What power we bring
to our lives, when we just look around and accept what we have
and never stop looking ahead!  In front of me lies the challenge,
behind me is yet another experience, walk on forward.  As a
Christian believer, I have always enjoyed the Lent into Easter
season.  Of course, Christmas held my interest as a child, but
after eight years of AIDS, it is Lent where I get my strength.
Perhaps like no other image, alive, dead or otherwise, seeing the
Christ in the Garden of Gethsemane gives me the desire to move
along.  There amidst the olive trees, he kneels supporting his
face with his hands.  He knew his future and it was death.  His
conviction embraced real acceptance, while the tears from his
heart moistened the ground below through his calm fingers.  The
dilemma is that when it is my time to go, why is it OK for Christ
to accept God's will and not me?

     You see, the image in front of me isn't going away.  I have
watched the images of AIDS from way back when it was called GRID.
How much more real does it get?  My disease, of course, is
different just because it is mine.  But, you know, my intuition
says:  relax, observe and pray, your head is in the right place.
I see now for how many years I have been preparing the way for
this part of my life.  When close friends and comrades died, I
sought the same intimacy with others just so that when this time
came in my life, I could live completely dependent on everyone in
my life, while not interrupting their lives in the process.


     Amidst committee meetings, board meetings, speeches and
protests, I have been steadily preparing.  My knowledge comes
from our community.  I am humbled that my understanding of AIDS
has been in this way.  I have had the opportunity to stay clear
on the issues, since it is my life these issues encompass.  For
as long as I have the energy, AIDS has my attention.  It is
because of all those who went before me that I can with good
conscious declare the end is about compassionate listening and
intimate knowledge, shared freely.

     There is a satisfaction of doing AIDS with an audience.
Since I have spoken HIV in almost every breath for the last six
years, my experience is broadened by those leaders I once joined
around the table.  It is still important to have AIDS publicly.
I serve as a reminder of our war and why we are determined to
battle on.  Each day I am alive someone new sees a man with AIDS.
Each day another ear is filled with the realities of AIDS in my
body.  Each day a victory is shared in my office when I make it
through another day without a seizure.  Each day encourages my
hope for tomorrow.  And so it is quite OK for me to say I am
preparing for death.  I say it to you, I have said it for weeks
to those who would listen.  I as strongly say, as one human can
say to another, I am not giving up, and I am certainly not
bringing death on any faster!

     My lovely friend Rick Noll and I share an expression that
must be done a la Bette Davis, "Dead!  You Know."  This has
become the theme of a very special process we do with each other.
Rick prepares me for leaving and I prepare him for when I let go.
The expression somehow reminds us with humor of a vital part of
our relationship together, as I battle this disease we call AIDS.

     Those of you who notice such things have seen my name
replaced on the top of the Being Alive Board of Directors' list.
The day I accepted the difference between abilities and
capabilities is the day I said "let go."  I have for years
watched close comrades and friends lose their cognitive
abilities.  In our relationship, anger and paranoia replaced
kindness and support during their end-stages.  Where once I could
count on their unique insights and visions, frustration, sympathy
and fear came to control our alliance.  To back away with grace
and dignity ensures compassion from others.  My brain struggles
to control this body while losing ground day-by-day.  Before I
have an opportunity to create havoc in the lives of those who
support me, I felt it best to become an observer and not the
leader.

     Acceptance comes in many packages.  While I find myself
armed to tackle certain decisions, the real emotions that arise
once the decision is acted upon are overwhelming.  There have
been so many varied opinions on correct HIV therapy.  Now that I
am at this point, it is hard not to look back towards treatment
decisions I made years ago.  "Perhaps I should have...," or "If
only I had..."  haunt my sanity.  When the focus becomes the
future, these somehow fade away.  They will not affect tomorrow;
they are energy spent.  What we experience from this point
forward should rule supreme.  I am going through this one time.
I wish to have the grace to understand my situation each and
every step forward until I begin to finally let go.  May I just
say, what a journey!

*****

BITS AND PIECES -- SOCIAL SERVICES

by Fran Mc Donald, Social Services Editor

A PLAY ABOUT WOMEN AND HIV

     "AIDS/US WOMEN, Silent No More" is a play with a cast of all
women, following their lives from before HIV to the problems they
encounter in coming to grips with the profound changes in their
lives with the advent of AIDS.  The play will be presented at
Being Alive on Saturday, June 5 at 3:00 p. m.  and you can
reserve seats by calling 213.969.2445.  There will also be
presentations on other dates at Highways in Santa Monica,
Barnsdall Park in Hollywood, All Saints in Pasadena, McGroaty
Center in Sunland, and Catch One Disco in L. A. For dates and
times, call either the number above or me.

BEING ALIVE'S WOMEN'S NEWSLETTER

     The best news in a long time is that this newsletter makes
its debut next month and will be seen quarterly thereafter.  It
will be written by and for women infected or affected by HIV/AIDS
and have important information on medications, treatments, and
community resources.  The hope is that it will help make many
women realize that they are not alone and that by moving forward
together with life a new understanding and facts will replace
fear and pain.  Articles are actively sought, as are letters to
the editor.  Address these to Women's Newsletter, 3626 Sunset
Bl., LA 90026.

LESBIAN and GAY LABOR COALITION

     I had the pleasure in April to be present when this
organization chose its name the Coalition may well prove to be a
significant part of the labor movement, so it was a privilege to
be there.The Coalition has members from northern and southern
California, including SEIU locals 535 and 660 in Los Angeles, and
seeks equality for all lesbians and gays in the labor force.  Of
particular concern, as regards this column, is the recognition of
significant others as eligible to what have heretofore been known
as "spousal benefits" (most importantly, health insurance).
Among topics discussed at the last meeting were plans for a
contingent in the upcoming Lesbian and Gay Pride Parade on June
27, strategy for gaining domestic partner benefits at Kaiser
Permanente, and next year's National Labor Conference in New
York.

     New members are welcome.  If this is of interest to you,
please contact James Green at 213.654.5576 or Teresa Conrow at
213.680.9567, X236 and join the crusade!

HAY FEVER

     If you suffer from allergies to pollen, HIV may make matters
worse.  Seldane now has a pollen hot-line that describes
conditions that may affect your allergy.  A report updated weekly
is available 24 hours per day for 50 locations in the US,
describing predominant pollens, temperatures, precipitation, and
effects of antihistamines on certain pollens.  The toll-free
phone is 800.765.5367.

SILVER LAKE LIFE:  THE VIEW FROM HERE

     This film recently won the Grand Jury Prize at the Sundance
Film Festival and more awards will surely follow.  This a
shattering film made by Tom Joslin and Mark Massi, tracing the
last part of their 22-year relationship from their AIDS diagnoses
to their deaths.

     It will be shown throughout the US on June l5 on PBS (in Los
Angeles at l0 pm on channel 28).  This is cinema verite at its
most verite, just devastating and I urge everyone to see it.

     (Fran McDonald has been in Social Services for 21 years and
     welcomes your calls at 213.664.4772.)


*****

THE PRESIDENT'S NOTES

by Walt Senterfitt, President Of Being Alive

     People with County is off to a great start!  This new
organization of and for people who are clients of the 5P21 AIDS
Clinic at LA County/USC Medical Center has had three meetings,
each with a larger attendance than the last.  The aims are to
give support and advice to each other in making the County system
work for us and to be an authoritative voice for clients with the
professional staff and administration of the clinic and hospital.
Current tasks on the agenda are:  1) setting up a peer counseling
and problem-solving service on site at the clinic, 2) assuring
more rapid availability of all useful drugs in the pharmacy, 3)
demanding a better system for evening and weekend emergency care,
and 4) assuring continuity of clinic services at an adequate
level throughout the upcoming protracted construction of a new
County USC hospital and clinic facility.  (In an act of
staggering bureaucratic "genius," the present 5P21 building was
put up two years ago right smack in the path of the first phase
of the new construction.)

     The group is experimenting with different meeting times to
find the most workable slot or rotation.  The next meeting will
be held at 7 pm, Tuesday, June 29, at 5P21 while the building is
open for a regular Tuesday evening clinic session.  Light supper
will be available!

     Anyone who is a general or research client of 5P21 is
heartily encouraged to come, bring others, and even call me ahead
of time to get involved.  Also, those readers who are interested
in developing similar organizations at the other main County
facilities King-Drew, Harbor/UCLA and Olive View are also
encouraged to contact me.

KUDOS

     Special thanks go to Stu Zinn and John Messari for
organizing the Memorial Day barbecue, car wash and silent auction
at Stu's bar, The Lodge, in North Hollywood.  The joint benefit
for Being Alive and the Homestead Hospice and Shelter will have
been completed, no doubt to great success, as you read this.

     For the second year in a row, Richard Abel organized a
successful Mother's Day (in fact Mother's Week) plant, flower and
craft sale.  Proceeds were split between Being Alive and Project
Angel Food (for which we serve as a distribution center in Silver
Lake).  More than 90 Being Alive volunteer workers honored and
celebrated their mutual contributions at a party May 15.  Ron
Christopher, the volunteer coordinator, tells me special thanks
go to John Buse who coordinated the food and cooked most of it.
Hector Ortiz, Gilbert Wallace and Louise Baxter also were central
to the party's success.

     We give a belated accolade to Harvey Silverman, Esq.  for
conducting an excellent legal workshop on wills and power of
attorney instruments at the office on a Saturday afternoon in
April.  Sixty people gave Silverman their avid and appreciative
attention.  The attendance attests to the need for this
information in our community and we are working with Mr.
Silverman to establish a regular volunteer legal clinic at Being
Alive.

     Being Alive member Michael Weinberg has asked that we
publicly thank two public employees who went out of their way to
solve a client's problem and in so doing expanded service for all
PWAs with the same problem.  The difficulty was getting the AIDS
Drug Program, the state's program of subsidizing HIV-related drug
costs even for those whose incomes don't qualify for MediCal, to
cover the combined use of ddI and AZT, a commonly recommended but
not yet FDA-approved regimen.  The employees whose willingness to
cut red tape sets a laudable example are Kimberly Green of the
Pasadena Health Department and Barbara Hartz of the California
State Department of Health Services, Office of AIDS.

     If anyone knows of a Being Alive volunteer or person in the
community who deserves special thanks, please leave me a message
and I'll try to do so when I get the chance.

*****

COLLECTED WISDOM JUNE 1993

by the Members of Being Alive

     (This is a forum for the homespun cures you've uncovered for
     common HIV-related ills.  Send in your low-tech remedies for
     thrush, uncooperative condoms, and the other bugbears that
     you and your peers have cleverly thwarted.Use the following
     information with caution and at your own risk.  Nothing
     helps you live longer than a strong dose of common sense.)

MOLLUSCUM

     This troublesome wart-like lesion can be treated with salves
or lotions containing phenol, such as phenolated calomine or
Campho-Phenique.  A Being Alive article on treating molluscum
(June 1991) suggested very gently abrading the lesion, then
covering it with phenolated calomine overnight.

     Wart treatments containing salicylic acid like Compound W
may also help, but also try to do it overnight since it turns the
area white (expect a little sting).  You'll need to stick with
these treatments for at least a couple of weeks before seeing
results.  Benzoyl peroxide, a common ingredient in acne
treatments, and a topical formulation of tea tree oil, are
alternatives.

     A word to the wise:  Never pick on molluscum lesions unless
you enjoy incessant bleeding and excruciating pain.  To avoid
breaking them open and spreading them to other parts of the face,
shave with an electric razor.

THRUSH

     Tea tree oil is also a low-cost treatment for thrush.  Put a
couple of drops in a glass of water and rinse, or try swallowing
the concoction if you have problems farther back in your mouth
(be sure to read the label of the bottle before ingesting).

MOUTH SORES

     Sipping strong tea may help (when we say "tea" we mean the
black or green variety, not herbals).  If you use tea bags, leave
them to steep for a couple of minutes, then dunk them repeatedly;
this should help release the tea's tannic acid, a natural
astringent.  Sipping hot or warm unsalted liquid may also help
temporarily, as will nursing a cold beer or other mildly
alcoholic beverage.

PILL CASE CAMOUFLAGE

     If you're shy about carrying a pill case, try hiding it in a
box of cigarettes.  You can also stash a day's pills in an empty
floss dispenser, a Tic Tac box wrapped in masking tape, or a
cheery PEZ candy dispenser.

CONDOM TIPS

     Old condoms can get sticky and frustratingly uncooperative,
and many manufacturers only print the expiration date on the box.
If you carry condoms with you, write the expiration date on each
packet with a felt-tip pen or china marker as you remove it from
the box (home cooks know this trick from dealing with eggs).
Carrying condoms around in your wallet speeds the deterioration
of the latex and can also gum up the lubricant.  Use it or lose
it every couple of weeks.

GENERAL DRUG TOXICITY

     Drinking two glasses of cranberry juice a day helps flush
toxins out of your system.  More isn't better; two glasses will
do it.

DRY SKIN

     Switching to glycerine-based soaps, trading warm showers for
hot, and taking warm baths followed by a head-to-toe lotion
rubdown are simple solutions.  Popping a vitamin E capsule won't
hurt either, especially for smokers.

     If you've found a home remedy for any HIV-related problem,
please drop us a line at the Being Alive office, att'n: Collected
Wisdom column.

*****

COMMUNITY TO HONOR MARK KATZ

     He says he can't whistle or snap his fingers, but ask Mark
Katz to name the top four pop music hits for the year 1962 and he
will reply:  "The Locomotion," "Twist and Shout," "Duke of Earl,"
and "He's a Rebel."

     There are other fascinating aspects of this doctor, but one
thing is certain.  In the battle against HIV, few individuals
have made as many significant contributions as has Mark Katz, M.
D. In the HIV community of service providers, physicians, and
people living with the disease, he is one the most familiar and
respected physicians in southern California.

     Mark is completing his fith year as volunteer medical
consultant to Being Alive.  He recently completed the taping of
the sixtieth consecutive monthly medical update in which he
reports on the latest trends and treatments for HIV disease. In
recognition Mark will be the first recipient of Being Alive's
Spirit of Hope Award at a tribute dinner in his honor at the
Hollywood Roosevelt Hotel, June 22 at 7 pm. Among the guest
speakers will be LA County Supervisor Edmund Edelman. Ferd Eggan,
LA City AIDS Coordinator, will be the Master of Ceremonies.

     Born and raised in Queens, New York, Mark is a physician who
combines Western and Eastern notions of healing.  In college, he
leaned towards professional journalism, but instead went to
medical school.  Now a physician with journalistic interests, he
perceives himself as "covering" the pandemic.  He will tell you
that as a child he was socially withdrawn and that he mostly read
books.  Somewhere in his teens, pop music became an interest.
And these two things he carried into his adult life.

     Mark proudly admits that he gets his sense of humor from his
mother, Sylvia.  And he jokes about what inspired him to became a
doctor:  "I remember at home being called the `surgeon' when
cutting the fat off the meat.  Actually, I used to play with the
Visible Man and Woman which basically showed the inner parts of
the human body, the bones, brain, heart, kidneys.  I was
fascinated by the composition of the human body."

     He went to Cornell University in upstate New York, then to
Syracuse for medical school and completed his residency in
internal medicine in Madison, Wisconsin.  He began working in
emergency medicine, deciding after two months the emergency room
was his kind of place.  "In journalism, each day is different.
You go to the news desk not knowing what the assignment will be.
And going to work in the ER is similar because each day is
different."  In 1984, Mark met Hugh Blake with whom he had an
immediate bond.  Hugh lived in Los Angeles and Mark relocated
here in early 1985 and went to work for Kaiser Permanente in
Emergency Medicine.

     His first contact with HIV, then called HTLV-3, was through
a Shanti advertisement in the LA Reader.  Interested in
volunteering in emotional support, he called Shanti and took the
training in August 1985.  As fate would have it, the doctor who
was scheduled to present the medical aspects cancelled. Mark was
enlisted to present the medical portion of the next workshop.
Since that time, he has presented at all 35 Shanti ESV trainings.

     In late 1987, Scott Barry, one of the original founders of
Being Alive, asked Mark to conduct a medical update for the whole
county.  The first forum was scheduled for February 1988. "I was
so nervous about presenting the update.  A friend Victor Brown,
one of the first facilitators for Being Alive, told me these guys
really know their stuff!  I basically pulled an all-nighter the
first time I did a Being Alive Medical Update," Mark remembers.

     Last year, Mark was appointed Southern California HIV/AIDS
Physician Coordinator for Kaiser Permanente Medical Group.  In
this capacity, Mark is able to effect change at a regional level.
"I don't call the clinical shots.  But in my job I get to do a
lot of thinking...about what we should be doing in HIV
care....Kaiser may not discover the cure for AIDS but we owe it
to our patients to provide the most up-to-date compassionate care
available.  I'm at Kaiser as an advocate for the patient, as
somebody to upgrade the quality of our staff knowledge at every
level and as someone to stay on the cutting edge of HIV care."

     Often, Mark is asked what keeps him from entering private
practice and making a million bucks.  Mark will tell you he only
has two suits and to be in private HIV practice he would need a
dozen more.  "Actually, I'm really a child of the 60s. When I was
in medical school, there were only three things I wanted:  a
leather couch, an antique oak roll top desk and an old juke box.
And in my first year of residency I acquired all three.  That's
basically all I want.  My books, records and photographs are my
most treasured physical possessions.  And certainly my most
treasured possessions in my life are my mind, memories and
friends.  But second, if I were doing full time HIV work...10
hours a day, I wouldn't be able to be the community volunteer
that I am.  I decided years ago that what I hoped I represented
to the community was a physician who was informed but neutral."

     Mark talks about a near death experience earlier this year
when his car was hit at high impact.  "It's so funny but I had
been thinking before the accident...that I'm so excited about
this tribute.  It's such a dream come true, but what would happen
if I weren't able to see it.  And in fact, had I been at the site
a millisecond sooner, it probably would have killed me."

     In light of this experience Mark says, "I anticipate on this
night...that the love I feel from those attending...will bring me
closer to accepting my own death.  What a wonderful thing it is
to hear, one time in your life, the comments that would be said
at your funeral.  Being Alive is fulfilling this for me.  On June
22, I'm going to have my family, friends and colleagues in one
room at the same time and hopefully have a couple of nice things
said about me."

     For ticket information, tribute sponsorship or to place an
advertisement in the dinner program, please call Being Alive at
213.667.3262.  "A Tribute To Mark Katz, M. D.  " is partially
supported by the generosity of Kaiser Permanente, Stadtlanders
Pharmacy and the Kraus-Beer Medical Group.  Twenty tickets will
be given away by lottery to people living with HIV/AIDS.  If you
are interested, please send a letter to Being Alive, "Katz
Tribute Lottery" 3626 Sunset Blvd., Los Angeles, CA 90026.

*****

LA DIARREA Y COMO TRATARLA

Por Jennifer Jensen, RD y traducido por Aldo Uriarte-Lafosse

     El acto de defecar sucede normalmente si se esta saludable y
es una manera natural de eliminar impurezas en forma de heces. De
otra manera, uno puede tener una diarrea muy acuosa y casi
intratable, como lo diria el doctor en nuestro registro clinico.
Probablemente, todos los individuos con VIH sufren de diarrea en
las diferentes etapas de esta infeccion.  Hay una variedad de
infecciones oportunistas que pueden causar diarrea y el
diagnostico de una u otra, puede llevar al doctor a prescribir la
medicina mas eficaz.

     Pero no todas las causas de la diarrea pueden ser facilmente
determinadas y si la nuestra es de un patogeno desconocido,
sufriremos de los sintomas pero sin lograr un diagnostico .
Mientras todas las personas que estan involucradas de una manera
u otra en el tratamiento del VIH desearian poder decirnos la
causa de esta; muchas veces no pueden y nos dan un tratamiento
aparente.

     Tenemos que considerar que estos tratamientos son llamados,
en la jerga medica, "profilaxis opcionales" y como su nombre lo
indica, uno tiene la opcion de escoger.  Podemos usar
medicamentos (drogas) como Lomotil e Imodium o los que no
necesitan receta medica como Pepto-bismol y Kaopectate e incluso
tintura de opio, en los casos severos.  Se puede aseverar que
todos los medicamentos desde una aspirina a la morfina, conllevan
efectos secundarios asi como efectos en la nutricion.

     Si uno esta viviendo con la enfermedad del VIH, es mas que
seguro que se esta muy cansado de tomar tanta medicina y cuando
sumamos los efectos secundarios en todo orden, muchas veces
pensamos que los efectos serian menores si obviaramos alguna
medicina, incluyendo la anti-diarreica.  No seria interesante
poder evitar siquiera alguna droga?  Buenas noticias!
Probablemente se pueda.

     Comencemos por saber lo que estamos comiendo.  Si tenemos
diarrea, lo que comamos o dejemos de comer puede representar un
mundo de diferencia.  Por ejemplo:  las ensaladas son saludables,
pero como la lechuga tiene muy poco valor nutritivo y carece de
calorias, las ensaladas podrian ser una perdida de tiempo y de
inapetencia, en lugar de ayudarle en su salud nutricional.  Peor
aun, las ensaladas tienen fibra que es lo que uno debe de evitar.
Entonces, si comemos ensaladas cuando estamos con diarrea, no
solo arruinamos nuestro apetito sino que tambien ingerimos
alimentos escasos en valor nutritivo.  Por lo que debemos evitar
las llamadas "ensaladas nutritivas", porque lo unico que si haran
es hacernos correr al inodoro (excusado).

     Ahora que estamos enfrascados en alimentos nutritivos, no
nos estanquemos en ensaladas.  Miremos tambien a los alimentos de
color blanco contra los alimentos de color oscuro.  Comamos pan
blanco, pasta y arroz y cereales bajos en fibra.  Arroz integral
y pan de trigo, son muy nutritivos, pero al mismo tiempo ricos en
fibra, lo que hara que la diarrea empeore. Entonces, por que
parar aqui; eliminemos los vegetales, porque estos tienen fibra o
mas fibra que los alimentos oscuros y que las ensaladas.  Por
otra parte, los jugos de vegetales pueden darnos los nutrientes
necesarios sin tener que ingerir la fibra, que sabemos que es
perniciosa cuando se esta con diarrea.

     Tambien deberiamos evitar productos lacteos, como:  leche,
leche agria, queso crema, helados de leche y requeson.  Muchas
veces se puede comer yogurt (hummm) o queso.  Experimentemos y
veamos si estos alimentos nos causan diarrea.  Deberiamos evitar
tambien, sopas muy cremosas y combinaciones como: lasagna,
enchiladas, pizzas y salsa blanca.  Porque podrian contener
lacteos como la leche y crema, altamente ricas en grasa.
Hablando de esto, evitemos comer alimentos con mucha grasa,
aunque estos puedan ser digeribles o no. Ahora que estamos
eliminando todo lo que pensabamos era saludable y que creiamos
poder ingerir.  Que podemos comer? Buenas noticias.  Algunos
productos podrian cambiar el curso y sintomas de la diarrea, como
sigue:  Comamos platanos(bananas), mangos, papayas y pure de
manzana.  Aunque algunas personas tengan problemas con estos
alimentos, habran otras que encontraran que les ayuda en algo.
Esta dieta usualmente ayuda a las personas afectadas con el VIH y
que padecen de diarrea. Frutas como fresas y moras, empeorara la
diarrea.

     Consuma cebada.  Este grano puede frenar el movimiento
intestinal, lo que hara que a su tiempo, ayude a controlar la
diarrea.  Una buena receta con el grano de cebada, es: Compremos
una lata de vegetable beef and barley (sopa de vegetales con
carne y cebada) y un paquete de pearl barley (cebada perlada),
que se encuentran cerca del departamento de arroz y pasta en los
mercados de abarrotes y esta envuelto o enpaquetado en plastico.
Sigamos las indicaciones de la etiqueta y agreguemos una taza de
cebada y mas agua, si queremos que sea mas aguado, tipo sopa
y...buen apetito.  Los vegetales en la sopa como todas las en
lata, seran mas digeribles.  Esta combinacion frenara el
funcionamiento de nuestro tracto gastro intestinal.

     Tomemos agua de arroz.  Acatemos las instrucciones para
preparar arroz blanco, pero usemos una taza y media mas de agua.
Cuando el arroz este cocido a nuestro gusto, colemoslo para
quitarle el agua.  Esa agua la pondremos en el refrigerador y la
vamos a tomar con poca azucar o con miel de abeja.  Esta es una
vieja receta latina llamada horchata.  Esta se puede comprar ya
preparada en mercados latinos y viene en diferentes sabores.

     Tomemos Ricelyte, este maravilloso producto es vendido en la
seccion para ninos de cualquier mercado de abastos.  Tambien nos
ayuda con la llamada mala diarrea de infeccion cryptosporidium.

     Esta es una historia:  Un paciente con crypto, colitis CMV y
MAI con mas de 40 squirts al dia por espacio de mas de un ano,
tomo 6 litros de Ricelyte durante un dia y luego defeco mas
solido.  Esto podria funcionar para cualquiera de nosotros y si
nuestra vida gira alrededor de la diarrea, uno es capaz de hacer
cualquier cosa para controlarla, usando alimentos como medicina.
Esta persona es el nutricionista del proyecto Angel Food y
comunica que Ricelyte es enviado a todos los clientes que
padezcan de diarrea.

     Finalmente, tomemos mucho liquido.  Porque con la diarrea
estamos eliminando liquido muy vital para nuestro organismo. Si
no hacemos algo para reemplazar los fluidos, podemos
deshidratarnos y una deshidratacion severa puede llevarnos al
hospital e incluso a la muerte.  Tomemos mucho liquido.  Los
componentes en Ricelyte son muy parecidos al electrolito que
necesitamos para reemplazar lo perdido con la eliminacion de la
diarrea y que ayuda al balance de los fluidos del cuerpo.

     Todo esto es solo como informacion.  No tengo ninguna
coneccion con ninguna compania farmaceutica.  Los productos que
recomiendo en este articulo, son mencionados porque funcionan y
dan resultados.  He estado rogando a la compania Mead-Johnson ,
la que produce Ricelyte para que apoye un estudio clinico acerca
de la diarrea relacionada con el VIH. Me siento frustrada con la
poca atencion que han puesto a la documentacion presentada sobre
los resultados de Ricelyte en personas con diarrea.  Sin una
prueba clinica, los doctores que se dedican a tratamiento del
VIH, probablemente nunca sabran de estos resultados.  A no ser
que esto se haga conocer a traves de los encargados de salud de
algunas clinicas.

     Si necesita mayor informacion o si tiene interrogantes
acerca de lo que se menciona en este articulo, por favor llame al
telefono que aparece abajo.  Con mucho agrado atendere cualquier
problema que pueda tener sobre eliminacion, de una manera
individualizada.

     (Jennifer Jensen es una dietista registrada y experta en la
     nutricion para personas con VIH, que practica en forma
     privada en Santa Monica.  Quien gustosamente le atendera al
     310.450.5581.)

*****

TRATAMIENTOS ALTERNATIVOS VIVIENDO MAS...Y MEJOR

por Victor Ontiveros

     Los nuevos reportes sugieren que la mayoria de los seres
humanos sufrimos de deficiencia en nutricion.  Esto es mucho mas
importante aun, para nosotros los que vivimos con el VIH ya que
se ha descubierto que la razon por la cual mucha gente fallece es
debido a la mala nutricion.  Llegamos, entonces a la conclusion
de que, debemos de poner mucha mas atencion a una nutricion
preventiva.  Asi mismo, ayudamos al sistema inmune a repararse,
ya que la enfermedad y el uso de medicinas, a veces, tan toxicas
lo agobian tanto.

     La medicina tradicional no se enfoca en prevencion y a las
companias farmaceuticas no les interesa invertir en ensayos sobre
nutricion, principalmente porque los nutrientes no se pueden
patentar y sus ganancias son pocas.

     Los expertos en la nutricion sugieren que nunca es tarde
para empezar a restaurar los nutrientes aunque las deficiencias
empiezan muy temprano en el desarrollo de la enfermedad (y por
supuesto se complican a lo largo de esta).

     Nosotros las personas infectadas al igual que el cuerpo
auxiliar medico, debemos de reconocer que la buena nutricion no
es una "alternativa" sino parte de nuestro cuidado medico.

     La mala nutricion viene de dos factores:  La mala absorcion
y una falta de nutrientes necesarios.  La mala absorcion puede
venir a causa de varias cosas:  Por infecciones en la boca o en
el esofago, debido a medicinas que causan nausea o vomitos
(dificultando el comer), asi tambien por bacterias, viruses y
parasitos que son organismos que afectan y que perjudican el
sistema inmune.  La otra causa es la falta de nutrientes
adecuados en nuestras dietas, ya sea por una falta de
conocimiento sobre nutricion o porque nuestras finanzas son
limitadas para abastecernos de alimentos adecuados.  Sin embargo,
existen maneras de ayudar al cuerpo para que absorba mejor los
alimentos:

     El agua ayuda a la absorcion, se recomienda que por lo menos
8 vasos de agua se consuman por dia (principalmente agua filtrada
para personas con menos de 200 celulas T.

     Una manera de controlar que los nutrientes se absorban
mejor, es controlando la diarrea por medio de una dieta que
incluya lo siguiente:  Platanos (banano, guineo), arroz,
manzanas, te y pan tostado.  Esto por supuesto es solamente un
suplemento a una dieta completa.

LAS VITAMINAS

     Es sumamente importante que suplementemos nuestra dieta con
otros nutrientes como las vitaminas, desgraciadamente no existe
una manera apropiada de como recetar estos suplementos. Pero cada
uno de nosotros nos debemos educar en estos tratamientos y de que
manera nos pueden beneficiar.  Tambien es importante recordar que
cualquier vitamina que tomemos, ayuda solo si se sigue una buena
dieta sin abusos a la sal, el azucar y los estupefacientes.  Al
mismo tiempo se debe tener tener mucho cuidado que no
compliquemos nuestras vidas con dietas que van a ser dificiles de
mantener.

     Se recomienda que las vitaminas se tomen con comidas y es
preferible que sean comidas o productos alimenticios que tengan
los mismos nutrientes (ejemplo vitamina C con naranjas o
brocoli).

     He aqui algunas de las vitaminas que se deben de agregar a
nuestras dietas:

Vitamina C

     Oficialmente se recomienda 60mg/por dia pero nosotros
deberemos tomar cantidades mas grandes, Sin embargo, cuando uno
toma mas vitamina C de lo que requiere el cuerpo, esta atrae agua
al intestino y causa la famosa diarrea.  la mejor manera de
controlar esta condicion es aumentando poco a poco la dosis de la
vitamina hasta que el cuerpo se ajuste y no produsca diarrea.
Una dosis recomendable de 8 a 10,000mg diarios

Vitamina E

     La deficiencia en vitamina disminuye la habilidad de las
celulas del sistema inmune a atacar a los germenes (tambien es
posible que reduzca la toxicidad del medicamento AZT).

BETA CAROTENO

     El beta caroteno es el pigmento amarillo que tienen ciertos
vegetales y frutas y que el cuerpo convierte en vitamina A.
Cuando existe una deficiencia de vitamina A se han notado
disminucion en el numero de linfocitos (celulas blancas) y en la
produccion de anticuerpos.  La dosis para personas con VIH es
20,000 a 50,000 unidades internacionales por dia.

NAC A-ACETYL CYSTEINE

     Esta sustancia es un Aminoacido (parte de las proteinas), se
ha comprovado en el laboratorio (en vitro) que detiene la
reproduccion del VIH e incrementa la actividad de algunas celulas
del sistema inmune.  La dosis recomendada es de 1,500 a 1,800 mg
al dia ( este medicamento se toma antes de ingerir comestibles, o
sea con el estomago vacio).

VITAMINA B6

     Esta vitamina es buena para la produccion de hemoglobina y
ademas ayuda a que el sistema inmune funcione apropiadamente.

     Se debe de tomar una dosis de 100 mg al dia (hay ciertos
efectos adversos como neuropatia), algunos pacientes han
reportado incrementos en las cuentas de celulas T con la adicion
de vitamina B6 a su dieta.

VITAMINA B12

     Deficiencia de esta vitamina es muy comun en todos nosotros
los infectados con VIH.  Los sintomas de deficiencia incluyen
nueropatia periferica, confusion, defectos en la memoria,
depresion, fatiga, anemia.  La deficiencia es casi siempre a
causa de la mala absorcion.  Por lo tanto se cree que para
suplementar al organismo es mejor que se usen las inyecciones
intramusculares.  Pacientes han reportado mejoramiento como:  Un
alivio de la depresion, un nivel mas alto de energia, y una
reduccion en la anemia que causa el AZT.  Se recomienda una dosis
de 2,000ug 3 veces a la semana

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