Julie Falco's breaking the law, and she doesn't care who knows it. Every morning, Falco isn't ashamed to say, she eats a small marijuana brownie to deal with the effects of multiple sclerosis.
Every couple of weeks she bakes a new pan of brownies, each pan containing about 14 grams (half an ounce) of marijuana. According to Illinois law, possessing 10 to 30 grams of pot is a misdemeanor with a maximum penalty of a year in prison and a $2,500 fine. The law doesn't make any distinctions for medical marijuana use.
So far Falco hasn't been in any trouble with the law, but she thinks medical users should be protected from sanctions. To that end, she now serves as a board member of Illinois Drug Education and Legislative Reform, which is helping to promote a medical marijuana bill in the Illinois legislature. Falco plans to testify before the state's Human Services Comittee at a hearing for the proposed bill on February 17 in Springfield. House Bill 407, called the Medical Cannabis Act, would allow seriously ill people to cultivate up to 12 marijuana plants and possess 2.5 ounces of usable marijuana. If patients are physically unable to grow the plants, a caregiver would be authorized to do so for them.
That would work for Falco, who wakes up in pain every day. "As soon as I get out of bed, my legs tighten up and they don't relax," she says. "After a full day, my neck, shoulders, and back are in pain from straining to compensate for the lack of leg mobility."
Falco, who's 39, uses a walker to get around her Ravenswood apartment. She uses a wheelchair when she goes out. There are nine steps up to her apartment, where she lives alone; it takes her about five minutes to climb them, using her arms to hoist her legs up each step. "Sometimes I take the steps two at a time," she says. "I call it my cardio."
Mornings are worst. "Usually when I get out of bed, I'm hunched up over the walker and every step I take is labored," she says. "I've described it as wearing a suit of armor. I just feel so heavy, and every step is a strain. Each step takes five to ten seconds before I get to the next one. Half an hour to an hour after eating her morning brownie, she feels something switching in her body.
"When the brownie kicks in, it's like I'm standing up straight. I'm walking with the walker, but I'm walking heel to toe." She places the heel of her hand on the kitchen table to demonstrate, slowly rolling her weight forward through her palm, to her fingertips. "The armor is gone."
She says the brownies don't make her high--a common report from people who take marijuana to deal with pain. "It's completely different from recreational use," says Falco, who smoked pot occasionally in college. "It's a completely different feeling. The high for me is feeling pain relief throughout my body."
One day in 1986, when she was 20 and a student at Illinois State University in Normal, Falco was walking across a Jewel parking lot and found it difficult to lift her left foot. "It just kind of dragged," she says. She thought she might have pinched a nerve. A few days later, onstage at a club with her band New Position, she felt shaky and weak. At the end of their next gig, she had to be carried off the stage by her bandmates. "The whole left side of my body, not just my foot, was stiffening up," she says. "My legs were tight, and my arm got stuck in one position. I was like, Whoa, what's going on?"
She was hospitalized in Normal, where she underwent a series of inconclusive tests. The doctor ordered a spinal tap, which was also inconclusive, but it suggested Falco might have multiple sclerosis.
Falco couldn't ignore what happened, but she soon felt well enough to put the episode behind her and return to her classes.
She graduated with a degree in communications in 1988. Not long after that, she noticed that when she tried to follow moving objects with her eyes she got dizzy. After talking to an eye doctor, Falco ended up back at the hospital, where she got an MRI. She was told definitively that she had MS, but she wasn't told much else. Her doctor simply gave her a book about MS and told her to go home and rest.
"At that time, there were no real treatments," she says. "I was on my own."
She tried to get on with her life. She traveled around Europe for a month, then settled in Chicago, where she moved from job to job, doing customer-service and office work for a theatrical-lighting company, MCI, a music studio, and a company that restored old paintings. On the side she DJ'd at weddings and private parties.
Donna Sotiros, a friend since college who now also lives in Chicago, says Falco was trying to ignore the worst possibilities. "She didn't share with anyone that she had the disease," Sotiros says. "When people saw her with a cane or limping, they'd ask if she'd sprained her leg and she'd make a joke of it, saying it was an old football injury. She didn't want to talk about it."
While there's no known cause or cure for MS, researchers believe sufferers' immune systems attack fatty sheaths called myelin surrounding nerves, leaving scar tissue and damaging nerves. The symptoms and their severity vary from patient to patient.
Falco began to monitor her own symptoms, keeping notes on what helped and what didn't. "I know my body," she says. "I know my MS. I know more about me and how to deal with this than my doctors." She investigated alternative therapies like acupuncture, reflexology, and massage. Smoking marijuana was one of the things that helped her relax when the pain wouldn't let her sleep.
But it had drawbacks. The smoke sometimes aggravated her headaches, so she started looking for another way to ingest it. She got the idea of baking the brownies from a Web site, and she experimented until she got the recipe right last February. She uses a packaged brownie mix (usually Duncan Hines Double Fudge) and follows the directions on the package, but with one variation: before she adds half a cup of oil to the mix, she simmers half an ounce of ground marijuana in the oil for about an hour. Then it all goes in the mix with the rest of the ingredients before baking.
Eating the brownies made a big difference. "It helped with the insomnia," she says. "It helped with leg spasticity, and it has helped with numerous side issues, including bladder urgency. It helps me deal with crowds. Out in busy places, like a restaurant, too much input seems to assault my nerves. It's like I hear every dish clinking, I hear everyone's conversation, I can hear everybody walking in and out of the rooms, I can hear the music. It's like too much sensory experience, and I just start shaking." The brownies also seem to help with flulike side effects from a conventional pharmaceutical she takes called Betaseron, a drug commonly prescribed to MS patients. It's believed to slow the progress of MS in some sufferers by preventing attacks on nerve cell coverings.
Falco has tried a long list of drugs for her various symptoms, each with its own unpleasant side effects. There was Tylenol 3 for pain, which caused constipation. Prednisone for flare-ups of various MS symptoms left her "swelled up like a balloon." Wellbutrin, which was supposed to alleviate depression, didn't work and made her lose weight. Baclofen for muscle spasticity reduced her heart rate.
In comparison, the side effects she gets from pot seem negligible. "Sometimes I kind of get a dry mouth," she says. "So then I have to drink something. Actually, it helps to keep up my water intake each day. It's a benefit!"
Once she'd perfected her brownie recipe, Falco started talking about her pot use. She told her general practitioner and her neurologist that she used marijuana for medical reasons. The GP seemed indifferent, but her neurologist, the University of Chicago's Anthony Reder, gave her a letter of support.
Around the same time, Falco read an article in Conscious Choice about Brenda Kratovil, a glaucoma and MS patient from Waukegan who was arrested in 2001 for growing marijuana plants in her backyard. In court, Kratovil tried to use a medical-necessity defense. Her eye doctor testified that marijuana was a viable treatment for her. Her lawyer argued in pretrial hearings that marijuana was a better option for his client than a 19th eye surgery, or steroid-based eyedrops that caused a toxic reaction in her body. As there's no legal exemption for medical marijuana users in Illinois, the defense wasn't allowed, and Kratovil was convicted.
The prosecutor didn't seek jail time, and by early 2004 Kratovil was testifying in Springfield in favor of a new medical marijuana bill proposed by Representative Larry McKeon of Chicago. (That bill, a precursor to the current one, proposed limits of six plants and one ounce of usable marijuana per patient.)
Falco started educating herself on the therapeutic use of marijuana by reading books and Web sites. She got on the mailing lists of groups like Illinois NORML (whose board I'm on) and the Marijuana Policy Project, and decided to get involved in the fight for legalization. "It's just too important of an issue," she says. "Of course, I have a lot to lose, anybody does, but I'm not married, I don't have kids, so I don't have the responsibility of getting them involved too. There's probably so many people out there living in fear because of this."
Public support for medical marijuana isn't a problem. Eight out of the nine times the issue has been placed on a ballot, even in generally conservative states like Montana, voters have favored it.
But opponents say marijuana is a dangerous drug that is rightfully outlawed and that no changes in the current laws are necessary.
The White House Office of National Drug Control Policy, sometimes called the drug czar's office, released a booklet in November called Marijuana Myths & Facts: The Truth Behind 10 Popular Misconceptions. The "debunking" of myth number five, "Marijuana is used to treat cancer and other diseases," starts off like this:
"Under the comprehensive Drug Abuse Prevention and Control Act of 1970, marijuana was established as a Schedule I controlled substance. In other words, it is a dangerous drug that has no recognized medical value."
The booklet acknowledges that some people may find help from Marinol, an FDA-approved pill that contains THC, the main psychoactive ingredient in marijuana. Falco hasn't tried Marinol, nor has it been recommended to her. Her own research has led her to believe that many of marijuana's therapeutic effects come from other types of cannabinoids found within whole marijuana. "I've got the source," she says. "Why should I bother with a pill that's just a fraction of the source?"
Dr. Andrea Barthwell, an addiction specialist who served as a deputy director of the ONDCP from 2002 until last year, says the words medical and marijuana simply don't belong together: "Medicines in this country go through a number of stages of development before they are brought to the marketplace. The first thing I have a problem with is bringing medications to the marketplace through popular vote or legislative action and not through the scientific process we have relied upon in this country for one hundred years."
She lists a number of possible negative effects from eating marijuana: short-term memory loss, confusion, anxiety, euphoria, nausea, and, in those stopping long-term use, aggressiveness. Barthwell says for patients like Falco, there's also the risk that their pot is contaminated, since its sources are unregulated.
Barthwell believes there's great potential for future medicines developed from the compounds in marijuana plants, but she's against legalizing the whole plant for medical (or any other) use. "People have to ask themselves, as they sort of glom on to this whole argument about 'Let's make this crude weed a medication,' is this really the one plant that the great maker put on this earth that's going to cure everything that ails us--the first real magic bullet in this form--or is it a cruel hoax that exploits our compassion for the sick and dying?" she asks. "It certainly looks like it's got the potential to be a cruel hoax, because a crude plant is definitely not medicine."
The data on medical marijuana are spotty and inconclusive, as even Lester Grinspoon, professor emeritus at the Harvard School of Medicine, author of Marijuana: The Forbidden Medicine, and the go-to guy for just about every pro-marijuana article written in the past 25 years, admits. He says cannabis can help with symptoms from a variety of medical conditions like AIDS wasting syndrome and the nausea that comes with chemotherapy, but these conclusions are based on anecdotal evidence and have been impossible to confirm in clinical trials. "We have not been allowed to do the kind of studies on people who use the herbal form of marijuana that we need to do," Grinspoon says.
According to Rick Doblin, president of the Multidisciplinary Association for Psychedelic Studies, a nonprofit group that's working to legalize medical marijuana, the government has set up elaborate bureaucratic mazes to make research on the cannabis plant as difficult as possible. For example, MAPS has been working with researchers from an outfit called Chemic Laboratories in Canton, Massachusetts, to get government approval to import ten grams of cannabis (less than what Falco puts in a single pan of brownies) from the Netherlands to study a vaporizer that would heat pot almost to the point of burning, releasing the cannabinoids into a mist that is believed to have less tar than the smoke from burned marijuana. No human being would consume the vaporized marijuana, Doblin says; it would instead run through a machine to measure the results.
Doblin and Chemic have been waiting 20 months for approval for the study from the National Institute of Drug Abuse. MAPS has sued the federal government for the delay, and while a court ruled that 20 months is not an unreasonable delay, the group has appealed the ruling.
Doblin says lack of approval by the FDA is the strongest argument that medical marijuana opponents have--a good reason for opponents to stop such studies from going forward. "They want to have it both ways," he says. "They want to block research, but they want to be able to say there is no research. Our goal is to take marijuana through the system and to focus on the science."
On its Web site the National Multiple Sclerosis Society has a statement on medical marijuana. "There have been large numbers of anecdotal reports from individuals who state that smoking marijuana (cannabis) has relieved some of their MS symptoms, including spasticity and pain," it admits, then says, "Studies completed thus far, however, have not provided convincing evidence that marijuana benefits people with MS."
Illinois actually has a medical marijuana law on the books already. Part of the Cannabis Control Act of 2002, it states that the Department of Human Services "may authorize the possession, production, manufacture, and delivery of substances containing cannabis by persons engaged in research . . . where the Department finds that [a] physician licensed to practice medicine in all its branches has certified that such possession, production, manufacture or delivery of such substance is necessary for the treatment of glaucoma, the side effects of chemotherapy or radiation therapy in cancer patients or such other procedure certified to be medically necessary." So far, however, one word within the law has prevented any research: may.
In 2002 Bryan Brickner, then chairman of Illinois NORML, wrote to the Department of Human Services requesting information on obtaining marijuana on behalf of Michael Savitt, Brenda Kratovil's eye doctor. Savitt, the letter said, wanted "to research the effects of glaucoma on a patient and will certify that cannabis is medically necessary for her treatment." The response Brickner received from the DHS quoted the law, italicizing the word may and going on to say, "The Act does not require the Department to establish a cannabis research program. The Department has no such program, and it is unlikely that the Department will establish such a program in the foreseeable future."
Back in October Falco watched the medical marijuana opponents--including former DEA administrator Peter Bensinger and Judy Kreamer, president of the Naperville-based antidrug group Educating Voices, Inc.--testify against last year's bill. "It's just old thinking and old stigma," she says. "You know, smoking pot and reefer madness, all the old stereotypes. That's where they are, and that's where they're stuck."
Supporters of the new bill hope it will pass in the Illinois House in March or April, then move on to the senate. If it passes there and is signed by the governor, Illinois could become the 12th state with a functional medical marijuana law.
Falco was nervous before she testified at the October hearing, but she realized that her background in music and communications had prepared her for the experience. She looks forward to testifying again next week. "This is the most real performing job I've ever had," she says, "and it's probably the easiest, because this is my story and I know it."
Art accompanying story in printed newspaper (not available in this archive): photos/Paul L. Merideth.