Stop the Drugs—A Personal
Détente
by Jim Pickett
Can I ask you why it is that
a 34-year old man with 1030 T-cells and a viral load measuring
less than 50 (“undetectable”), who has never had
a moment of HIV-related illness, is on HAART?
Doesn’t that seem crazy?
That man is me, and I may
be crazy, but the drugs themselves have given me the only
HIV-related illnesses I have experienced. Why are we heavily
treating people like me? Why? It’s like using the atomic
bomb on a village of 20 pygmies (my apologies to all pygmies).
Over and over and over, day after day, decimating the same
little village, the same little pygmies. We need to—I
need to—save that firepower for something a little bigger,
I think.
To be clear, when I started
on HAART two and a half years ago, I had T-cells in the high
400’s and a viral load that was rather detectable, in
the 70,000 range. I started on a protease-based combination
when I saw my numbers initially begin to change, from a stable
T-cell count that had been numbering in the 700’s and
a stable viral load which had been happily hovering around
the 10,000 mark. My numbers changed dramatically for the good,
right away, as soon as I started the cocktail, and my counts
continue to hold strong despite way less than perfect compliance.
Way less than perfect.
Never, never, never
once since I began drugs has anyone ever indicated
that I may be able to take a breather. Ever. When I began
my regimen I asked my doctor if this meant that I’d be
popping pills forever, every single day, in some shape or
form, for the many years I am planning on being here. Forever?
He said yes.
But isn’t that a ridiculous,
completely impossible notion? And especially now, seeing the
horrible things the drugs are in fact doing to people—the
drugs, not the HIV, but the drugs used to “treat”
HIV—AIDS wards treating “drug complications”
and “adverse events,” people with heart attacks,
pickled livers, bad kidneys, anemia, “deadly rashes,”
lipodystrophy, permanently crippling neuropathy. Is the risk
less than the benefit for someone with scads of T-cells and
a few whimpy viruses?
I have felt like shit for
the last two and a half years. Nauseous and bloated and gassy
and urpy and poopy and tired and headachy and cranky... no,
those ain’t necessarily my normal states. Why am I making
my life so exceedingly difficult, ball-and-chained to decidedly
non-recreational drugs when I am basically healthy? Why am
I not saving these drugs for when they will do me the most
good, when the risk of nasty side effects is actually less
than the benefits I will obtain? Why am I on state aid to
receive these drugs? (I couldn’t possibly pay for them
after my clinical trial ended.) Because doctors and large,
multinational pharmaceutical companies still actually push
the agenda of “eradication” via the obsessive need
to keep the viral load “undetectable.” Why is that?
We all know eradication is a fallacy, a very bad joke, so
why, are we still telling it over and over and over in the
hopes it will be funny? Well, there is a lot of money to be
made. My simple little regimen of 18 pills per day runs about
$12,000 a year—some pretty good coins.
Why are friends and family
and lovers and social workers and fellow HIV-ers and everybody
and their sister’s cousin’s childhood crush all
on the bandwagon, too?
I certainly understand that
the drugs have made for many miracles in many people’s
lives, have brought them back from the brink, have given them
second and third lives. Their experience of side effects is
fundamentally different from mine, they are nuisances and
inconveniences to be sure, but a whole lotta nada compared
to some of the terrifying, excruciating, degrading things
that can and will happen to you with AIDS. There are many
people who need the kind of firepower HAART offers. Won’t
argue with you there.
But I am not one of them,
yet. Am I? So again, I ask, why am I using the big guns when
I could still be playing with water pistols?
We are all obsessed with drugs.
We, me included, have listened to people who whisper their
stories of going off meds, or choosing not to do them period,
with a particular look of pity/horror, and we, me included,
try to talk them into thinking that decision through again.
Drugs are the answer, after all. They whisper their stories
because they are off the party line, out of the mainstream,
challenging the status quo. They whisper them because they
are heretical. Radical. Nuts. But that’s all changing.
Going off meds doesn’t seem so crazy, so suicidal, anymore.
I am on a doctor-sanctioned
drug holiday. Hooray! I have agreed to monitor the markers
of health that are so important to everybody, i.e., T-cells
and viral load. Hooray! I will dutifully give blood and have
it tested, I will wisely discuss the results with my doctor.
Hooray! But I am, and will be, much more hesitant, and cautious,
about going back onto another cocktail, or anything at all
for that matter. Hooray for care, caution, preparation! And
I say this, not knowing, and without regard to, what the lab
indicators will indicate. How I feel should count somewhere.
It’s not just a viral load game. But there are no known
lab tests to determine the amount of “feeling like shit”
a person has.
We need to be wary, more wary.
We don’t need to panic, but we need to be wary. We need
to carefully sift through the hype, through the many messages
out there. Competing for our affection. Enticing us, wooing
us. We need to be forever mindful that the drug companies
are mighty. They do indeed have a lot of control and influence,
too much, over research and our physicians—we need
to understand that. It’s not just their slick ads
we need to question. We need to be clear of the role these
pharmaceutical giants play when our doc advocates a toxic
toxic toxic cocktail the very day we test positive. It’s
all part of the combination. We need to be clear that a “cure”
will mess up this money making machine. We need to be clear
that reducing consumption of their luxury-priced goods is
not good for business.
I definitely think the meds
have their place and time, and have the potential for great
benefit. But there are forces who are very powerful and persuasive
who want us to make the place for meds “here” and
the time “now and forever.” “Hit hard, hit
early, never stop hitting.” It is big business. And it
is the message that continues to rule the day, glossily, breezily,
rampantly, though I believe it is beginning to lose ground.
And that makes me hopeful.
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Armageddon
“If I was positive,
I would go on antivirals within an hour,” says
Dr. Mary Romeyn, an HIV specialist in private practice
in San Francisco. She calls HIV Armageddon”—the
final battle between good and evil.
Hit hard, hit early?
Yes. “First, we know that our bodies reach a set
point [the lowest viral load] early in HIV where the
incredible virulence of the virus is matched by the
incredible power of our immune system,” she says.
“Second, unlike the virus, our immune system is
not replicating. Its ability to replicate is quite finite.
HIV re-invents itself every day and a half. We reinvent
ourselves every 80 years, if we’re lucky. So the
virus has an advantage.
“Also, early on
the cells that are preferentially recognizing [thereby
destroying] HIV are killed off. Past that set point,
with a high viral load set point [allowed to occur],
we’re probably lost HIV specific immune power,”
Romeyn says.
Treatment—hard,
and early—helps people fight off new strains of
HIV from developing in their bodies and maintain the
cell lines they have. Without therapy, she says, “the
cell line is over—good-bye.”
Still, she believes
therapy continues to be useful beyond that point. There
are also treatment advances that are coming, such as
mediators that help put out naive cells to recognize
[and fight] HIV.”
“One guy won the
Crixivan lottery. He’s out five years on the same
regimen suppressed [undetectable]. Some people in my
clinic are four years on the same regimen suppressed.
It’s really hard to do,” she admits. Her clinic
might be more likely to attract people who also believe
in hit hard, hit early. They’re not necessarily
put on HAART right away. Their emotional and social
needs are considered before a treatment is agreed upon.
“Immune systems are not the only thing we have
to treat,” she notes. Beyond that, we have to treat
and support the will and character it requires to fully
fight this fight.
“Critics like Mark
Harrington have to be deeply respected because they
live through it. But when others are researchers who
don’t work in the pit with patients and don’t
fall in love with them and have to keep them alive,
I think they sometimes lose perspective. What’s
fashionable is not always what’s right,” Romeyn
says. Still, she says, “if someone came in with
a set point of 1000 T-cells and 93 viral load, I would
feel I can’t argue with that kind of success.”
Treatment then would be deferred with close monitoring.
She said research presented early this year points to
ways of monitoring how the set point is settling.
She takes issue with
the idea that regimens are likely to fail people. “You
should be able to suppress them,” she insists.
“Given a patient who is that aggressive about ordering
their life and given the more tolerable regimens we
have now, I want to hit hard. Just because there’s
a lot of mediocre medicine and a lot of mediocre adherence
doesn’t mean we say, ‘forget it.’ Strive
for excellence.” Dr. Romeyn would not list regimens
she considers tolerable, because she says such decisions
must be highly individualized.
Still, she admits that
regimens are less likely to keep advanced patients suppressed,
which she believes is only another argument for hitting
early. “This is the battle for generations and
generations to come. These are our kids and they’re
dying and we can’t let them die.”
—Enid Vázquez
Dr. Romeyn is the
author of HIV and Nutrition: A New Model for Treatment.
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