ANGUISHED ADVOCATE CRUSADES FOR LEGAL POT; BRYAN CLARK DOESN'T WANT TO BREAK THE LAW TO SURVIVE by Joshua L. Weinstein Staff Writer Copyright (c) 1997, Guy Gannett Communications, Inc. Portland Press Herald March 23, 1997 MAINE/NEW ENGLAND, Pg. 1B 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