Shayne Higgins flinches and shields his eyes from the sun as though it were a laser beam cutting through his skull. He sits helplessly in his motorized wheelchair and waits, in visible pain, as two friends hastily assemble a makeshift ramp so he can roll into the house and out of the daylight.
Higgins is pale, gaunt and skeletal, with hollow, sunken eyes and limbs that are withered and curled from the ravages of advanced multiple sclerosis. He appears drained by the 10-minute ordeal of getting into the home of his friends "Willy" and "Tessa" (not their real names). Willy is Higgins' medical advocate and registered marijuana caregiver. About once a week, Higgins makes the laborious, 40-minute trip from his home at the Starr Farm Nursing Center in Burlington to this house in rural Chittenden County so he can smoke medical marijuana.
Higgins, 45, was diagnosed with MS in 1998 after suffering a seizure. Since then, he's lost his eyesight and most of his mobility. Higgins speaks in slow, slurred sentences and fades in and out of lucidity. His spaced-out demeanor is only partly due to the MS, Willy explains; mostly, it's a result of the 14 to 17 prescription drugs Higgins takes every day to control his pain, seizures and muscle spasms.
Higgins is one of 29 Vermonters registered with the Department of Public Safety to legally consume cannabis under the state's medical marijuana law, which took effect in October 2004. But unlike other medical marijuana patients, Higgins isn't allowed to consume cannabis in his own home. Starr Farm's administrators have told him that they could lose their Medicaid certification and federal funding if they allow him to possess or use a drug the U.S. government considers illegal.
Last summer, a Starr Farm staff member found a marijuana cigarette in Higgins' belongings and called the police. Although he had a Marijuana Registry ID card, the Burlington officer confiscated the joint; no charges were filed. Since then, the nursing home's administrator has told Higgins that he may not keep marijuana in his private room or smoke it anywhere on the grounds.
Willy calls the nursing home's position unjust, unreasonable and absurd. "They say they can't allow Shayne to use medical marijuana because they receive federal funding," Willy says. "Yet they're using a federal van and a federal driver to bring him here." Willy also points to Starr Farm's own "Resident Admission Agreement," which states that each resident "has a right to be free of interference, coercion, discrimination or reprisal from the facility in exercising his or her rights."
Higgins appears to be the only medical marijuana patient in Vermont caught in this cloudy legal area, but his case raises a number of larger questions: Does federal law always trump state law when it comes to the use of medical marijuana? Can the U.S. government use the threat of prosecution and financial penalties to enforce federal policies that are incongruous with state laws? And, more generally, do nursing home residents have the same privacy rights and protection from unreasonable search and seizure as people who live in private residences?
Once Higgins is inside the house, Willy goes into a bedroom, where two nearly mature pot plants are growing in a closet, bathed in the orange glow of an expensive lighting system. By law, Willy can only grow two mature plants and one immature plant at a time, and can keep no more than 2 ounces of dried, smokeable weed on hand. One of the plants, about 3 feet tall, is thick, green and bushy. Willy shakes his head at the other one, which is shorter and scrawnier. "This one's called Jack Hair. It's piss-poor and has no medicinal effect. I'll probably have to destroy it," he says.
Next, Willy opens a locked cabinet where he stores a vial of dried buds harvested from an earlier plant. Back in the living room, he hands the vial to Tessa, who packs Higgins a pipe full of the spongy, green bud and helps him light it. Higgins draws a deep puff and starts coughing slowly. Minutes later, the effects are visible. Higgins' curled fingers unclench from the armrests of the wheelchair and his taut frame relaxes, like a twisted rubber band returning to its natural shape. He reclines his head, closes his eyes for a moment, and manages a brief smile.
"I'd smoke at least once a day if I could," Higgins says slowly, putting the pipe down after two hits. "It calms my nerves."
Several minutes later, Tessa brings him a sandwich. Higgins' appetite is much better after he's smoked, she says. Before his arrival, Tessa expressed concern that her friend has lost a lot of weight, especially after a recent bout with bedsores. Several weeks ago, the swelling in his leg got so bad, they feared it might have to be amputated.
Willy retired from IBM after 30 years as a technician. He became Higgins' marijuana caregiver about six months ago after going through a state-mandated criminal-background check. Willy isn't paid for his work; in fact, it costs him $100 a year to be listed on the marijuana registry. He also covers the other expenses of growing Higgins' pot.
Willy has learned a lot about MS and cannabis' unique ability to relieve its symptoms, as well as many of the side effects of the pharmaceuticals commonly used to treat the disease.
Much of what Willy knows he learned from his friend, Mark Tucci, a marijuana patient who lives in Manchester. Tucci, 49, has had MS for about 12 years and grows his own herb. Although the state registry is confidential, Tucci has met four or five other marijuana patients in Vermont, and occasionally advises them on proper growing and harvesting techniques. The Vermont law didn't create a legal means for patients to obtain marijuana seeds or plants. Basically, patients are on their own, and must buy what they need on the black market.
Tucci admits it was hard for him to visit Higgins -- it was like looking in the mirror and seeing himself from several years ago.
"I was like Shayne -- all stoned, ripped, narc-ed out, laying in a ball and sleeping all the time," Tucci says. "Don't get me wrong. I still have MS. But I don't have a catheter in me. I know what day it is. I'm raising a family. I'm getting out and doing stuff around the house. I couldn't do any of that before."
Unlike Higgins, Tucci speaks in a clear and coherent voice. He can walk -- albeit with a crutch -- and is raising two teenaged boys on his own, though he can no longer work. He's reduced his daily meds from 17 to three. And he credits most of those improvements to his use of medical marijuana.
Tucci smokes about five joints a day, or about 2 ounces each month. He's figured out which strain works best to control his muscle spasms and which one manages his pain. In fact, Tucci has nearly finished writing a guidebook for other medical marijuana patients in Vermont on how to grow medical cannabis.
Tucci asserts that Higgins could make comparable improvements if he were allowed to smoke every day instead of just once a week. "If that man could have a constant supply [of cannabinoids] in his body, you give him three or four months and you could wean him off all that other crap," he says. "That poor sonofabitch just lays in bed and suffers. Who can live like that?"
Rachael Parker, administrator of the Starr Farm Nursing Center, refused repeated requests by Seven Days to be interviewed for this story. However, shortly before press time she issued the following statement: "We care about our resident and will continue efforts to assist him in managing his health needs. However, we must abide by state and federal laws with regard to this matter."
Last August, after Burlington police seized Higgins' marijuana, the nursing home also refused comment but issued a statement to the press: "A registry representative informed us that because our facility receives federal funds, and federal law prohibits the possession and use of marijuana, its possession and use in our facility is against the law, and therefore is strictly prohibited."
But Department of Public Safety Commissioner Kerry Sleeper denies that his office or the registry was ever queried on this issue, or offered an opinion on whether a nursing home's federal funding could be compromised by a resident's medical marijuana use.
Senator Jim Leddy (D-Chittenden), who chairs the Senate Health and Welfare Committee, says that although DPS initially opposed the medical marijuana bill, Kerry has since made it "very clear" that his agency would not violate the spirit or intent of the law. While Leddy recognizes that the Burlington police officer was put in awkward position because he was told that a crime was being committed, "That's where the nursing home exercised exceptionally poor judgment.
"We did not anticipate, nor did we ever think, that state or federal drug agents would come in and raid an individual, let alone a nursing home, and bust them," Leddy continues. "How the nursing home is handling this appears to be somewhat irresponsible and, frankly, inhumane."
Jackie Majoros is director of Vermont's Long-Term Care Ombudsman Project, which is part of Vermont Legal Aid. She advocates for people who are homebound or living in nursing homes, residential homes or assisted-living facilities. Majoros asserts that Starr Farm is Higgins' legal residence and he should be allowed to use medical marijuana in the privacy of his own room.
"It's hard for us to believe that federal prosecutors would prosecute someone like Mr. Higgins, who's struggling to manage symptoms of a debilitating disease," Majoros says, "or that they would choose to prosecute the nursing home for allowing him to get that relief in his own home."
When this issue first arose last summer, Majoros says she tried to contact administrators at other federally funded facilities around the country to see how they handle this dilemma. She didn't get very far. "There wasn't a whole lot of willingness to talk about it," Majoros admits. "They're all doing it below the radar."
The divide between the states and the feds on medical marijuana use has only grown wider in the last year. In 2005, the U.S. Supreme Court ruled that California's medical marijuana law, which was the first in the nation, does not protect cannabis patients, growers or distributors from prosecution under federal law. And in April, the U.S. Food and Drug Administration issued a statement denying that there are any medical benefits whatsoever from using marijuana.
But there's been no evidence thus far that the feds are pursuing federally funded health-care facilities that condone medical cannabis use, according to Kris Hermes, legal campaign director of Americans for Safe Access. The Oakland, California-based nonprofit tracks legal issues on the medical marijuana front. In California, it's estimated that 200,000 people use cannabis for medicinal reasons.
Hermes says he's never heard of a nursing home being threatened with the loss of its federal funding or certification. Nevertheless, "There's a lot of fear out there," he says. This is particularly true among low-income patients who live in federally subsidized housing. Some landlords who accept Section 8 housing vouchers are also wary, fearing federal asset-forfeiture laws if they condone medical pot growing or distribution on their property.
"It's something that the federal government has the ability to scrutinize," Hermes adds. "The drug laws are extremely draconian about what conduct is acceptable in subsidized housing."
Back in Vermont, Higgins is in a "holding pattern," according to Majoros. The Vermont chapter of the American Civil Liberties Union is researching his case and considering a lawsuit. According to Vermont ACLU director Allen Gilbert, plenty of case law covers the privacy rights of hospital patients, but very little addresses the privacy rights of nursing home residents.
In the meantime, Higgins says he'd be happy if Starr Farm just allowed him to smoke discreetly outside, the way other Starr Farm residents are allowed to smoke tobacco. But Higgins also says he'd prefer to move to another facility altogether, where, he says, he could get a shower more than once a week, the residents are closer to his own age, and the administration "isn't paranoid" about him smoking pot.
Still, Higgins' marijuana caregiver recognizes that moving him into another facility may not solve his problems. "We don't know that yet," Willy admits. "If they receive federal funding, we'll have to play this game all over again."