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News (Media Awareness Project) - Anguished Advocate Crusades For Legal Pot
Title:Anguished Advocate Crusades For Legal Pot
Published On:1997-03-27
Fetched On:2008-09-08 20:52:50
Contact Info:
fax:12077809440

Bryan Clark has taken all kinds of medicine in his 23
years.

When he was an infant, doctors pushed needles into the
tiny veins of his head and injected drugs to keep the young
hemophiliac from bleeding to death.

They've since prescribed him addictive narcotic capsules
and powerful antibiotics. They've given him drugs that made
him urinate blood. That made him dizzy. That made him
vomit.

Yet they cannot give him the drug he says he needs the
most not legally, at least. They cannot give him
marijuana.

Clark smokes anyway. It's the only thing that quells the
nausea that torments him always. Without marijuana, he
says, he cannot bring himself to eat.

So at 23 years old, Bryan Clark figures he has three
choices: break the law, change the law or die. Clark is a
survivor. He has had hemophilia his whole life and the
virus that causes AIDS for more than 10 years.

He's trying to change Maine's law.

At Clark's urging, State Sen. Anne Rand, DPortland, has
introduced a bill that would legalize marijuana for
medicinal purposes. State Rep. Kathleen Stevens, DOrono,
has introduced a similar bill. Members of the Legislature's
Joint Standing Committee on Health and Human Services are
considering both.

The issue is drawing national attention to Maine,
particularly because voters in California and Arizona
approved medical marijuana measures during last
November's elections. Maine's experience is similar to
California's. Both state legislatures have passed medical
marijuana laws, and both were vetoed. California's
Republican governor, Pete Wilson, vetoed that state's bill
in 1994 and 1995. Maine's former governor, John McKernan,
also a Republican, vetoed one here in 1991.

Maine Gov. Angus King, the nation's only independent
governor, said he is ''skeptical but openminded'' about
the bill. His administration expressed lukewarm opposition,
but he said he is unlikely to veto a tightly written bill.

After last November's election, the federal government
announced plans to spend $ 1 million and 18 months
surveying old studies of marijuana's medical utility.

Clark is unimpressed. He calls the federal survey a book
report.

He wonders whether he has 18 months.

The winter chill gnaws at Bryan Clark's arthritic elbows
and ankles, so he keeps the suburban Portland apartment he
shares with his fiancee unusually warm.

Despite its cold concrete slab floor, the apartment is a
pleasant place, where a black housecat named Floyd keeps a
wary truce with an iguana named Jazzy.

The apartment is quintessential suburban Maine. A
snowman stands guard outside, and family pictures and
knickknacks grace the walls.

But it's not all Ozzie and Harriett.

The tin on the coffee table the one that used to
contain Sleepy Time Herb Tea is now full of marijuana.

As far as Clark is concerned, the marijuana is
medicine. He believes he'd be dead without it.

He said he almost was.

Clark explained that he was chunky as a kid. Fat, even.
When he was 16, the 5foot10 Clark weighed 240 pounds.

In September 1992, shortly after he turned 17, Clark
caught the flu and began losing weight. Soon, he was
shedding pounds uncontrollably, spiraling into what's
called ''wasting syndrome.'' By April 1993, he was down to
118 pounds.

His family thought he was going to die.

When he smoked marijuana, though, the relief was
immediate. He could think about food without retching. He
could keep food down.

He started gaining weight.

And he has smoked ever since, to moderate his nausea.

''My nausea, that I feel 24 (hours a day,) 7 (days a
week) is like a normal person with hunger pain and
heartburn,'' he explained. ''Don't eat for four days, drink
a cup of black espresso with no sugar. That's about how I
feel. Minus the caffeine buzz.

''You know how you wake up and feel hungry, and you go
back to sleep, and you wake up again and you're not hungry
anymore, you're just tired, and hollow? If you don't eat
anything by 2 or 3 o'clock, you get this deep, bending
stomach nausea. That's how I feel.'' As he spoke, he
extracted a rolling paper from a pack of Jokers, and filled
it with marijuana. Nimbly, he rolled a perfect joint, and
took a puff.

It was after 2 p.m., and he hadn't eaten all day. He had
swallowed two Tylox the night before, and was still haunted
by a narcotic hangover.

A few puffs and seconds later, the nausea was gone.
Clark acknowledged a pleasant buzz, but he remained
coherent.

Others less effective

He said his other antinausea medicines are far less
effective.

''This is marinol,'' he said, holding up a bottle of 100
orange pearls that look like fish eggs.

Marinol is synthetic THC delta 9tetrahydrocannabinol
which scientists say is the active ingredient in
marijuana. It is to cannabis what vitamin C tablets are to
oranges. A bottle of 100 costs $ 1,521.98. Clark pays $ 3.
Medicaid pays the rest. But Clark said the legal drug is no
good.

It's hard to swallow medicine when you're nauseated, he
explained. Even if Clark can keep the medicine down, he
must wait about a halfhour for it to take effect.

Then, the nausea subsides somewhat. But unlike smoked
marijuana, marinol renders Clark profoundly, uselessly
stoned, and keeps him that way more than five hours.

With smoked marijuana, he can control the dose. The
nausea vanishes almost immediately, and the high diminishes
within two hours. Although he cannot drive, he can function
around the house.

Most importantly, Clark can eat.

He breaks the law to do so.

'Yes, you do have HIV'

Fifteen years ago, Bryan Clark sat crosslegged in front
of his television set at his boyhood home in Andover,
watching a Cable News Network report about U
Portland Press Herald March 23, 1997, Sunday,


a new illness called AIDS.

''That's what I'm going to die from,'' Clark, then 8
years old, told his mother.

''No, Bryan, you're not going to die of that,'' Linda
Clark remembers soothing her son. ''You'll probably never
get it.''

The child was insistent, his mother recalls. ''He said,
'Mommy, that's what's going to take me and all of the other
hemophiliacs. You just watch.' ''

Five years later, Clark was at Maine Medical Center,
suffering from a bleed in his hip. His doctor called him
into a conference room.

''We drew you and checked,'' the doctor said, referring
to drawing Clark's blood. ''Yes, you do have HIV. Do you
have any questions.''

Only seven months earlier, one of Clark's friends,
another hemophiliac, had died from AIDS.

Clark was born with hemophilia, a hereditary bleeding
disorder that means he lacks one of the factors that makes
blood clot. Hemophiliacs' blood is as thick as anyone
else's. It just doesn't clot as easily. Sometimes it
doesn't clot at all. Instead of developing annoying bruises
when they bump into something, severe hemophiliacs get
dangerous, painful internal bleeds.

To stop the bleeding, they inject antihemophilic
factor, which makes their blood clot.

HIV is passed along

In the 1970s and early 1980s, the antihemophilic factor
that Clark and nearly every other hemophiliac shot into
their veins was contaminated with HIV, the virus that
causes AIDS.

Within years, almost all hemophiliacs would be sick or
dead, their very lifeblood poison.

Even without AIDS, severe hemophiliacs lead difficult
lives. They act the same as other little boys. (Girls do
not get classic hemophilia.) They run around. They climb
trees. They also get hurt more easily than other children.
Clark woke up every morning wondering what kind of pain
he'd be in by the end of the day. Knowing he might be
injured before nightfall, he'd squeeze as much fun as
possible into each day.

Every few months, he'd get hurt and his parents would
rush him to the hospital for a shot of clotting factor.

The combination of hemophilia and AIDS is especially
brutal: At one point, Clark's violent, AIDSrelated
vomiting caused hemophiliarelated internal bleeding.

The prejudices of others, as well as the caprices of
genetics, also sting.

A junior high school teacher berated him when he refused
to write a paper about his plans for the future.

During his early years as an HIVpositive adolescent,
Clark figured he didn't have much of a future.

But eventually he found a future, and a calling, in
marijuana. 'Idealistic and innocent'

Bryan Clark had faith in the Legislature.

He figured if he explained he was sick, and that
marijuana made him better, his senators and representatives
would change the law and let him have the drug.

In 1994, at the age of 21, he called state Sen. Anne
Rand and told her so. Rand was impressed with the young man
and agreed to sponsor legislation. Clark traveled to
Augusta to testify in favor of it.

''I was so idealistic and innocent as far as the
political system,'' he said. ''On testimony day there were
some tears shed, there was emotion, every member of the
committee sat there and cried in their coffee cup on how
they could help us, felt bad for us. We had the Maine AIDS
Alliance in full support. We had support from all over.''

The bill was withdrawn after McKernan threatened a
second veto.

''I was surprised,'' Clark said. ''I was angry. I was
hurt.'' He was not deterred.

''Every winter and spring he tries really hard to get
the bill passed,'' said John Creelman, a longtime friend
who met Clark when the two were children at the hemophilia
clinic at Maine Medical Center.

''That's what's driving him to give these people the
faith, to make them see the light. Every year he fails he
goes home and stocks up more and more and more paperwork to
go back and hit them harder.''

Information stacks up

The paperwork Clark has amassed is impressive and
organized. Mention an article about medical marijuana and
Clark will pull it from an accordian file. Ask him about a
study and he'll retrieve it.

His knowledge and candor he acknowledges being
arrested on marijuana charges when he was 17, only to have
the charges dropped after explaining he needed the drug for
medicinal purposes have impressed legislators.

This year was the third year he spoke to lawmakers. By
now, he knows the procedure. He pulls his usually unruly
hair into a tidy ponytail and sticks to the point. He does
not show his fear that every time someone coughs or
sniffles, the germs will make their way to his compromised
immune system.

Members of the Health and Human Services Committee dab
at their eyes as he speaks. They almost unanimously agree
he should have the drug and that arresting him would be
unjust.

But they haven't been able to agree on how to help him.

They argue about what kind of message legalizing
marijuana for people like Clark would send to children.
They haggle over nuance.

They worry about the side effects of marijuana. They do
not mention that the side effect of Clark's clotting factor
a legal drug, approved by the Food and Drug
Administration was AIDS.

Legislators say they wish they could help him, yet they
ignore him during workshop sessions.

Clark, meanwhile, worries. ''Everybody says, 'Why don't
you just shut up, disappear, grow your pot and you will
never be bothered?' I say I can't do that.

''I already have to live in paranoia and fear of germs
and other people's illnesses and sicknesses. I'm just a
sponge for bacteria. I don't want to worry not only am I
going to catch a cold at Rite Aid that will kill me, but
that the police will come in and bust me and put me in
jail. I'm staggered by the thought of what I could catch in
prison.''

Doctors duel

Clark's doctor, Marjorie A. Boyd of Portland, supports
her patient.

''His use of alternative therapies (in particular,
cannabis) appear to be helping in the management of his
disease,'' she wrote in a Feb. 4 letter. ''It would be
foolish not to recognize that these patients use these
medications with good results. They do not abuse these
compounds and are quite responsible, not only in their own
use but in educating others to safe practices.''

John P. Morgan, a physician, professor at the City
University of New York Medical School and member of the
board of directors of the National Organization for the
Reform of Marijuana Laws, told Maine lawmakers this month
that marijuana is ''a quite, quite good drug.''

The medical community is, however, divided on the
matter.

Robert DuPont, the first director of the National
Institute on Drug Abuse and the nation's drug czar under
Presidents Nixon and Ford, remains dubious.

While DuPont said during an interview last week that he
sympathizes with Clark, he does not believe marijuana has
helped the young man.

''What happens when you get a particular patient like
this guy is he can be doing anything and perceive it as
vital to his wellbeing. Medicine does not work on
anecdotes,'' DuPont said.

''The history of dealing with serious illnesses is
replete with testimonials of people who can explain how
their cancer was cured or whatever else it was, was cured
by whatever.

''Many fraudulent cures are supported by a great
abundance of testimonials.''

DuPont calls medicinal marijuana a fraud. ''There is
no reason to believe that smoking burning leaves is an
appropriate medical treatment in the final decade of the
20th century in the United States. It's just stupid.''

The wave, though, even among physicians, is going the
other way.

The New England Journal of Medicine, in an editorial in
January, endorsed the use of marijuana for medicinal
purposes. The Massachusetts Health Department this year
embraced the concept.

Other states are irrelevant to Clark. He, like his
parents, their parents and their parents, was born in
Maine.

He is looking to this state's Legislature for action.

Members of the Health and Human Services Committee plan
to meet Monday to discuss the issue.

Clark had an appointment with his doctor Monday. His
condition has worsened, and he's supposed to begin a new
course of medications. He has rescheduled the doctor's
appointment.

Instead, he'll be in Augusta.

FOR LINKS to Internet information on medical
marijuana, see the Press Herald's World Wide Web site:
www.portland.com
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