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- Recently I had
several conversations with television
producers from CBS's 60 Minutes
and A&E's Investigative Reports programs.
Both networks are
planning major AIDS stories to be aired in coming weeks.
It seems that
both news teams have come to the same conclusion: "You
thought
AIDS was over? Well, think again, it's not." Both networks
based
their stories on three predominant themes that producers identified
in
their research: First, most people in America think that AIDS is
manageable
or has been cured. Second, many people in America no longer
consider AIDS
a personal threat. Third, AIDS drugs are extending life
but in the long
run, they may ultimately contribute to the patient's
demise.
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- In
the past year, two extremely well-informed, prominent
AIDS activists
died from AIDS complications. Both of these people had the
very best
healthcare and access to information in fact, they both wrote
about
AIDS treatments) and both had been long-term survivors of AIDS. Yet
they still died. One cannot reasonably expect to survive AIDS by one's
wits.Using one's wits to stay alive is an excellent tactic, but we are
not yet far enough along in the development of effective, low-toxicity
treatments to think that AIDS is manageable or survivable. It is
neither.
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- In the past year, more and more information has surfaced
about
the long-term toxicities of continuous HIV therapy. The news is not
good. HIV drugs are implicated in the development of HIV-associated
lipodystrophy
and heart problems, bone loss (hip replacement) and
intercellular malfunctions
called mitochondriosis and lactic acidosis.
Liver and kidney dysfunction
and failure are also Commonly seen in
ADIS. Add in the various opportunistic
infections and the toxicities of
the drugs required to treat them and you
will find many surviving AIDS
patients have become multi-drug resistant
to all aAIDS drugs and many
antibiotics. These patients, (myself included)
require stronger and
more toxic remedies month by month and year after
year. Ultimately one
eventually dies, either from an infection or complications
from
treatments.
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- Nobody these days bothers to say how long or how well
an
HIV-infected patient can expect to live. Because each person's lifestyle,
healthcare, ability not to become depressed and genetic immune response
varies, there is no way to predict how well or long one can expect to stay
alive with current anti-HIV treatments. To be sure, the old 5 or 10-year
death sentence has been reprieved for many on treatment. But how long
before
drug toxicities gang up and kill, or force them off
treatments?
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- When PWAs started experimenting with going off drugs
in order
to avoid toxic build-up, healthcare experts coined the phrase
"drug holidays" to describe such deviant behavior. Pressure to
remain compliant was so severe that when patients stopped taking the drugs
(because they were often being hurt by them), doctors were angry and
patients
were accused of laziness or lack of fortitude. Only later did
activists
and doctors coin a new phrase "Strategic Drug
Interruptions (STIs),"
the stopping of HIV drugs in order to
function or survive. It soon became
all the rage. But stay off the
drugs too long and you will face death from
the ravages of prolonged
HIV infection.
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- Since 1996, there have been little or no true advancements
in
the drug arsenals. We still have the same 3 drug families-- nucleosides,
non-nucleosides and protease inhibitors. HIV resistance to any one drug
in a family usually means resistance to the rest of the drugs in that
class.
AIDS patients know this sad fact all too well. A new drug called
T-20 is
in the pipeline. It is an adhesion inhibitor and appears to be
non-toxic.
It will barely make it to market. But the overall
groundswell of innovative,
active research on new pharmaceutical
targets for HIV by major drug companies
has dried up. Instead of
cutting edge research, they simply spend their
huge profits telling us
how wonderful the existing drugs are or reformulating
these same drugs
to make them more convenient to use.
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- Don't get me wrong, I'm not
displeased that we have been
able to extend life, I'm displeased that
we have lost the sense of urgency
about AIDS treatment, and America
thinks that AIDS is over. It is not.
It just takes somewhat longer to
die than it used to. The current crop
of AIDS drugs is
inadequate.
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- And healthcare for AIDS is slipping as well. When a patient
and
their doctor suspect cancer, the patient is referred to an oncologist
who carefully operates and performs a biopsy to determine what kind of
cancer it is and which drugs will be effective. The patient then goes on
various extremely regulated drug treatments or "chemotherapy"
with rigorous blood monitoring and close observation. After a given drug
or treatment cycle, the cancer specialist reevaluates and determines the
next course or action along with the patient and his or her family. This
is not the case with AIDS. You go into any old doctor's office, see your
HMO-mandated doctor (most likely a family or general practitioner) for
maybe 15 minutes, and walk out with a handful of drug prescriptions and
an order for lab work. Next. It's sort of like getting chemotherapy in
the lobby of a fast food restaurant.
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- What kind of virus do you have?
Who knows? Was it already
drug-resistant when you became infected, and
to which drugs? Your insurer
will pay for this kind of information once
in a blue moon. Does your immune
system have a natural ability to fight
your type of virus? Again, who knows?
Patients cannot readily have
tests run to answer that question unless they
are being studied by the
National Institutes of Health (NIH).
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- Are my drugs working? Maybe,
but we can't always tell
for sure, until you lose a big chunk of your
immune system. Are my drugs
killing me? That depends, how are you
feeling today? Is that liver pain,
gas or mitochondriosis? You need
more information but it is not available.
Sorry, your 15 minutes are
up. And so it goes. Eventually you learn the
best emergency rooms to
visit in your area and start shopping for a viatical
company to buy
your life insurance.
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- What are the drug companies doing to help, one wonders?
Open any
gay magazine and see the major drug company ads depicting sexy
people
living, thriving, partying and having sex with AIDS. They climb
mountains (without nearby toilets) and sail across oceans while popping
handfuls of happy AIDS pills. Surly AIDS is no longer a bad disease. And
check out those young handsome "come-love-me" AIDS drug models.
If I take the drugs, will I have sex too? Of course you will, unless you
become disfigured by lipodystrophy or find yourself on kidney dialysis.
You can always date in between intravenous therapy and emergency room
visits.
Pardon the sarcasm, but the point is this: The image presented
in the media
depicting AIDS patients is a lie invented to sell AIDS
drugs. Living with
HIV sucks. It starts out sort of ok, but it goes
downhill much too quickly.
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- Which leads to the final insult: Denial. Because people
think AIDS is over or manageable, they are probably not having safe sex
all the time and more people are going to become HIV-infected. Add to this
the cultists who claim there is no such disease as AIDS, and the sexy AIDS
drug magazine models and we have what is just now coming into view - TV
news documentaries which announce; "You thought AIDS was over, but
it's not, and it's getting worse."
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- So, happy World AIDS Day. The
world does not need AIDS,
yet it spreads out of control. Having AIDS is
no picnic, and it is as far
as I can see, still fatal. If you don't
have HIV, play safe and don't take
chances. If you do have HIV or AIDS.
perhaps it's time to get involved.
It does not appear that the
government or the drug companies are in any
hurry to cure this
disease.
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